Until I read it on The Straight Dope, I had no idea that HIV/AIDS cases are reported to the state. I was shocked. SDSTAFF Jill and the state for which she works seem to be very conscientious about patient confidentiality. I still have concerns about it though. There may be vulnerabilities somewhere in the reporting chain. Also, other states may not have the safeguards that hers does, even if confidentiality is a condition for funding.
Jill said that states using the unique identifiers have problems doing follow-ups. I think that the follow-ups may be an invasion of privacy. I don’t want the health department showing up at my door or sending me mail. Someone could see them or read the mail. Someone could move and then the current occupant might find out. I wouldn’t want them to call me either. Another roommate or family member might answer the phone or listen to a message.
Also, I am puzzled about one paragraph of Jill’s article.
“The CDC strongly recommends that there be free, anonymous (no names are required) HIV testing and counseling sites in all states. In my state, anyone can get a free, anonymous HIV test at any public health clinic. This way, people can be tested for HIV and have the results themselves before anyone else knows of it.”
If reporting is mandatory, then why is there anonymous testing? Doesn’t that defeat the purpose of reporting? Perhaps this is a state which only requires AIDS to be reported and not HIV. She says that people can have the results before anyone else knows of it. It implies that other people will eventually find out about the results. How will they find out? The testing is supposedly anonymous. If they testing isn’t truly anonymous, do they just wait awhile for the person to adjust and then tell other people?
“The Americans with Disabilities Act prohibits discrimination due to positive HIV status.” Yes, but there is still the stigma of being HIV positive. If testing is supposed to be confidential, why would the Americans with Disabilities Act be needed at all in this case? It is also a terrible burden for those who are illegally discriminated against. They may have to file a lawsuit and hire an expensive attorney. Also, just because there are safeguards about the information today, it doesn’t mean that there will be in the future. There may be a change in law and/or policy.
These concerns make me extremely reluctant to get an HIV test. If more people knew about the mandatory reporting, they may feel the same way. I believe that this may hurt efforts to control the disease.
Although my ill health has nothing to do with AIDS, I have had my privacy violated numerous times. My doctors have told my parents medical information (I’m over 18) without asking me. They have told workers in their office about it, even when it might be unnecessary such as billing people and receptionists. They have discussed my health in front of family, friends and even strangers. They have left very personal, non-urgent messages with my roommates. My pharmacist has done some of these things as well. These breaches of confidentiality hurt the doctor-patient relationship.