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Op-Ed in NY Times on HIV testing

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In the best of all possible worlds, of course everyone should be tested.  But we live in a cruel world and a crueler country when it comes to medical care.  Without proper--and ongoing-- intensive counseling, what is to become of many of the unfortunate individuals who test positive?  Who is going to provide this counseling?  What happens to those positives with no health insurance?  How will they get their medical care and their drug cocktails?  We have no resources in place to take care of all those who will suddenly discover to their complete dismay that they have a very serious and potentially life-threatening disease.  At least newt lives in a country with universal health coverage.

How many suicides will result?  How much self-medication will take place, like recreational drugs and a lot of unprotected sex?  How much physical abuse between partners will occur upon discovery of this most unwelcome news?   

Test away, but then what?  I have seen no discussion of what happens after the test results come in. 

Hey Peter,

Your column hit a number of good points, some of which have troubled me for some time.

Here in New Mexico, we have had name reporting since 1998. A person can still test anonymously, but if you access services, etc., your name is reported to the state.

We also have had mandatory testing of pregnant women for some time. Women may opt out, but must ask to do so, otherwise, they are tested.

While some may consider these mandates as intrusive, the reality is the virus is spreading and not just among "high risk" populations.

I recently had cause to fear I had been exposed to tuberculosis. Luckily, I hadn't, but the person in question does have TB.

Under state law, the person who has TB has no options. He must receive treatment and a nurse visits three times a week and must watch this individual swallow the pills. This will continue until the treatment regimen has run its course. If this person fails or refuses to take them, this person will be arrested and put in a hospital until the treatment is completed.

Why? Because TB is a communicable and lethal disease.

While not as easily transmitted, HIV also is a communicable disease, also lethal. Now I'm not advocating the draconian measures associated with TB, but it makes sense that making testing available and routine should be a priority.

Of the last seven HIV cases with which I have had contact, six have been heterosexual. Of those, two are at or near age 60 and already have health issues because of HIV.

These people would never have thought themselves at risk. The fact they were tested was pure happenstance.

As far as who will do the counseling, etc., there are people trained to do this. What needs to be done is to make this fact common knowledge to all health care professionals.

I received a call from a doctor's office this week because they had their first positive patient. They didn't know what could be done for this person, but at least knew my office was there and could refer this person to me.

Part of the problem with the stigma of HIV is the special treatment and clandestine tone associated with testing.

Here is another thought to chew on. Right now, budget restraints are causing testing sites here to refuse free testing to anyone not considered part of  a "high risk" group. The six straight people who I have recently met wouldn't have fit that profile and therefore wouldn't have been tested.

There have been 12 cases diagnosed this year among members of the street inebriate population in a small city south of where I live. Now, we have two similar cases here. The Department of Health is holding its breath because it is likely we are going to have a rash of diagnoses in a population that not only doesn't fit the high risk profile, but will be very difficult to provide care/assistance to.

Some of us feel as though we are sailing on the Titanic and we've just seen a tip of the iceberg.

What is needed is widespread testing of everyone - regardless of their risk factors. Too many people have been falling through the cracks or have been ignored until it was too late.

Just my 2 worth,



You highlight the big problem with the concept of "high risk groups". It's a load of bunkum. It's not who you do, it's how you do it that matters. I'd like to see the "high risk" questions criteria changed to questions about specific activities, for example, instead of asking a man "do you have sex with men", it would be far better to ask "do you use condoms for anal or vaginal intercourse, every time, no exceptions". We need the focus to be on activities - namely unprotected intercourse and needle sharing. If the emphasis were on these two activities, many, many more people would realise they have been at risk than currently do.

We try to get that message across to people here in this forum and I can only hope that each person we reach tells two friends, who tell two friends, who tell two friends....


Written consent is not a barrier to people testing for H.I.V.
Mr. Staley correctly points out that routine voluntary H.I.V. testing
as part of prenatal care has been largely successful in New York and, in
fact, throughout the nation. Unfortunately, what Mr. Staley fails to
acknowledge is that -- despite the fact that routine offering an H.I.V.
test is now the standard of care for pregnant women in New York --
written consent is still required. Written consent demonstrates respect for
the individual getting tested and transparency for a system that often
fails us. Did we forget the real barrier, which is the stigma that is
to often associated with HIV, it is real and in some instances people
die from it. Let\'s not forget the lack of knowledge from our so called
professionals.. Written consent is not a barrier to routine voluntary
testing it is the lack of untrained and insensitive healthcare providers.
Written consent proves accountability. Do not take away our human
>Here we go again disrespect, blame, and most of all mistrust of a
system that should be doing more for people with AIDS. Many AIDS activists support voluntary
H.I.V. testing into routine medical settings. What we do not support is to
continue to deprive and marginalized communities that are 
disenfranchised -- who are most at risk of infection -- of the right to give
informed written consent merely because medical providers might find it
inconvenient to talk to their patients and obtain a simple consent form.
(shame). Information, education, and trust of a broken system is the
missing link for more people to get tested and get the proper care that
they need.

Peter notes that there has not been a case of unauthorized disclosure of confidential names, but this misses a very great deal of the point.  It is often authorized disclosure of the names and of information which is the problem.  If information and names were ONLY used to facilitate access to care or counseling, then sure, what's wrong with that?  But if they subject you to prosecution merely for answering questions supposedly during a confidential session with your case manager? 

For example, in almost every state, a client's confidential information divulged to a case manager in the course of receiving prevention counseling (which is often melded with seeking care services) may be used against him or her in a court of law.  Your case manager ask you about your sexual behavior?  For god's sake, don't tell them about engaging in penetrative sex (or in many states, ANY sex) with anyone without disclosing your status - not a hand job, oral sex, sex with a condom - nadda.  Because in many states THAT is a felony, rgardless of the risk you putting the other person to, and your case manager may refer you to the prosecutor, or may even be duty-bound to refer you to the prosecutor.  And then your supposedly-confidetnial information is fully accessible through court-order - it is NOT privileged information, as it would be if given to a doctor, or similarly licensed professional. 

In counseling for substance abuse?  Asked in a group OR private session about your sexual behavior?  Before answering, FIRST ask if the information given is given in the context of a "privileged relationship" (like a doctor-patient relationship), and thus anot able to be used against you.  Most often it is not so protected.  This makes HIV precvention counseling much different than a 12 Step program for alcoolism, for example: you fall off the wagon once with these, you go to jail.

Now note that 2/3rds of the criminal laws against exposing someone to HIV have been passed in the last decade.  Thus while I'm with Peter regarding the changes in context medical which SHOULD make us move to easier testing, it is irresponsible to suggest 'times have changed' until the criminal law and punitive public policies are also changed.  This is a real tragedy, and activists should press for decriminalizing transmission, or for a narrow privilege for 'public health counseling' so that people CAN safely seek testing, cousneling, and access to care.  It has to be a TWO-FOLD change: making it easier to test, along with doing away with penalizing those who do.  Anything less is simply trusting in a justice system and government that already grinds down minorities, and stigmatizes people with HIV.   


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