HIV reporting

Cecil's Columns/Staff Reports
1

http://www.straightdope.com/mailbag/mnamed.html

This advice was very good for the United States, but I was tested in Canada. I was told that if I gave my name and tested positive, the sexual health clinic was required by law to squeeze the names of all my past sexual partnersout of me and phone them and alert them of my HIV-positive status.
I feel that this is a serious breach of confidentiality.
I was given a UI and told that if I tested positive, it was my own responsibility to tell my former partners.
I would think that it would be their responsibility to get tested every year as I do.

2

Mergirl, if I understand your post right, it says:
In Canada, you have the choice of taking an anonymous test or a non-anonymous test.

If you take the anonymous test, it is up to the testee to reveal results to anyone else who might have been infected by you, through direct contact or other means.

If you take the non-anonymous test, the health care worker will ask you for the names of people whom you might have infected and call them.

Is that correct?

If so, when they call the persons whom you might have infected, what do they way?
“Person X is HIV-positive, you should get tested.”
or
“We suggest that you be tested for HIV due to an event in your past.”

In the second case, your name would still remain somewhat confidential. In any case, it sounds to me like you have the choice upfront as to whether to take an anonymous test. Unless I didn’t understand what you were saying.

3

You are absolutely right.

I think part of this also has to do with me being angry at the government (as usual) for trying to be mommy and daddy to people and meddling in their medical care. Medical care is a right, so I love my OHIP (mmmm… Universal Health Care…), but I do not think that just because the government pays for health care, it should have a right to dictate what kind of choices individual patients make.

That’s the bigger issue.

4

I’m sorry, I can’t resist any longer:

Mergirl, have you ever heard the saying, “He who pays the piper, calls the tune”?

Just asking. :cool:

“Why, sometimes I’ve believed as many as six impossible things before breakfast!” - the White Queen

5

[[This advice was very good for the United States, but I was tested in Canada. I was told that if I gave my name and tested positive, the sexual health clinic was required by law to squeeze the names of all my past sexual partnersout of me and phone them and alert them of my HIV-positive status.]]

Partner notification is also conducted in the United States in many states. The name of the index person is never given to contacts, though. I used to have this job in an STD clinic. I would call the person named as a partner and say, “You’ve been named as a contact to a person with a sexually transmitted disease. I’d like to set up an appointment for you to come in and be tested.” If they asked (and they usually did) who named them, I would say, “someone who cares about your health. We are not allowed to disclose patient information.” And we weren’t. By law in the US, you cannot give out medical information about another person. There were times where it was fairly obvious, for example when I called a spouse who had only had one sex partner (who hadn’t been monogamous). I wouldn’t call this government meddling. I would call it intervening and stopping epidemics. If I’d had sex with someone who later turned out to have a communicable disease, I’d sure want to know it. Many people don’t have symptoms and such information gets them into the clinic to be tested and treated. This is the case for HIV, too.
Jill

6

[[This advice was very good for the United States, but I was tested in
Canada. I was told that if I gave my name and tested positive, the sexual health clinic was required by law to squeeze the names of all my past sexual partnersout of me and phone them and alert them of my HIV-positive status.]]

Not sure how they do it in Canada, but in the US partner notification is completely voluntary. No “squeezing” should be done. It can be seen as a service to the client who may not want to be the one to call others, notifying them that they may have been exposed to such a disease.

  • Jill
7

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.

8

[[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?]]

We were among a number of states that did a study to find out if it was common for people at risk (we talked to injection drug users, men in gay bars and heterosexuals in the STD clinic) to delay or avoid testing because they were afraid of names being “reported to the government.” We found that very few people knew what the laws were around this, and delayed or avoided testing for other reasons. But the CDC is still sensitive to the fact that there is a perception that this is so. To prevent people from avoiding testing and getting prompt treatment, anonymous testing is available at most Public Health Depts. At these locations, counselors should encourage anyone who tests positive to get care, and gives them good information about where such care can be gotten. Once the person signs up for care under their name then yes, the name is reported to the Office of Epidemiology. It gets put in a secure database and the identifying info. goes no further. People who are concerned about their private medical information becoming public should focus more on the clinics and doctor’s offices where they get care. Patient files are often not that well protected, and staff are not always sensitive to confidentiality. I went into an HIV clinic awhile ago and saw a sign-in sheet on the front desk. Anyone could flip through it and see who was being treated there.

I, and most epidemiologists, do all we can to assure the public that notifiable diseases and conditions that are reported to us are confidential. It’s also required by specific CDC protocols. If people refuse to allow this to happen, then our demographic and risk information is inaccurate (those not in the system are not represented). Then the health education to prevent spread is misdirected and the funding for services goes to the wrong populations.

That, believe it or not, is the short answer.

9

kjkolb said:

I believe what JillGat meant was that a person would probably eventually tell others about it - either confiding in close family/friends/partners, or seeking treatment. I do not think she meant to imply someone would have the results and report them at some delayed time interval.

10

[[I believe what JillGat meant was that a person would probably eventually tell others about it - either confiding in close family/friends/partners, or seeking treatment. I do not think she meant to imply someone would have the results and report them at some delayed time interval.]]

Right. Anonymous testing is just that. You give no one your name. They assign you a number you bring back for results.