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Author Topic: Op-Ed in NY Times on HIV testing  (Read 5540 times)

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Offline Peter Staley

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Op-Ed in NY Times on HIV testing
« on: June 07, 2006, 11:49:10 AM »
In Sunday's New York Times, in the "City Section," they ran an op-ed I wrote called "Why It's Right to Test."  You can read it on POZ.com by clicking here, or on nytimes.com by clicking here

I'd love to know what folks think.  Please post your comments in this thread.

Peter Staley
Founder
AIDSmeds.com
« Last Edit: August 14, 2013, 01:21:17 PM by iana5252 »

Offline Lisa

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Re: Op-Ed in NY Times on HIV testing
« Reply #1 on: June 07, 2006, 12:12:06 PM »
You are quite right Peter, and New York isn't the only place.
Where I live, the options for HIV testing are pretty much limited to the public health dept., or one, that's right I said ONE planned parenthood site in the city.
Otherwise, one must ask for testing via their family medicine doctor, or similar private health provider.
Good article.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline David_CA

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Re: Op-Ed in NY Times on HIV testing
« Reply #2 on: June 07, 2006, 12:19:10 PM »
I agree with all the good points about testing.  There's one big problem I have with any current testing policies.  The fact that my status, along with my name and other personal information, was reported to the county, state, and federal government is just wrong.  That's personal information.  In fact, the govt. had my results before my Dr. even had them.  Until HIV test results are confidential, the paperwork and informed consent are needed.  Otherwise, people assume that their test results are private.  I can see reporting my status anonymously for statistical purposes or for State funding if I were asking for financial assistance.  I'm not asking for govt. assistance.  If i do, in the future, that would be a different story.  I have private insurance and am bothered by this 'Surveillance Data'.  If we truly want to treat HIV like any other disease, we need to give the privacy that other health tests are provided.  

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
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08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
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05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
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Offline Iggy

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Re: Op-Ed in NY Times on HIV testing
« Reply #3 on: June 07, 2006, 03:49:04 PM »
.
« Last Edit: January 12, 2007, 09:49:10 PM by Iggy »

Offline Peter Staley

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Re: Op-Ed in NY Times on HIV testing
« Reply #4 on: June 07, 2006, 04:15:16 PM »
Iggy -- Almost all states, including NY, now have names reporting for HIV tests done in doctor's offices, hospitals, etc. (the state collects our names from docs, etc.).  However, these same states invariably allow anonymous testing sites to continue as well.  If your friends want to remain anonymous, they can usually find anonymous testing centers (like STD clinics) that won't ask for their name, and won't report anything to the state.  They can also use a home HIV testing kit.

Anonymous testing remains an option almost everywhere in the U.S.  All of us who argue for names reporting, or expanded testing, have always demanded the continuation of anonymous testing options.

Also, I strongly believe these fears are unwarranted.  There hasn't been a single case of HIV name disclosure by New York State, ever. 

Offline emeraldize

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Re: Op-Ed in NY Times on HIV testing
« Reply #5 on: June 07, 2006, 05:20:52 PM »
Peter,

My feedback is brief. I'm glad your piece was published. It is glaringly apparent we cannot get too much information out nor too often regarding testing, its importance and its availability. It is, to me, the most powerful key to making a swift and significant impact on the continuing toll of infections.

Emeraldize

Offline Oceanbeach

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Re: Op-Ed in NY Times on HIV testing
« Reply #6 on: June 07, 2006, 05:22:39 PM »
Dear Peter,

I remember the devastating childhood disease called Polio in the 50's and being dragged screaming into the Veterans Hall for mandatory vaccinations.  There was no choice on whether or not to have that vaccination and the disease was virtually wiped out by the time I reached High School.

I produced a series of radio commercials for the State Department of Health, Hawaii (Diamondhead Clinic) in the late 80's.  Those spots were picked up on every station with the individual stations accepting half price of the non-profit rate so they could partner with the Department of Health in this important issue.  Within weeks, everyone knew (on all 9 islands that, "even Indiana Jones uses a condom."

I live in California, you live in New York.  Your state and mine are the trendsetters in opinion, fashion, music, film, and popular culture.  The other 50 states follow what is done in California and New York, we set the tone, the world watches us and life goes on.  Until I read your article, I would not have known HIV testing was not readily accessible in New York.  I sit on several committees, all related to HIV in California and more specifically Sonoma County and am privy to a lot of information.  One issue that has gotten my attention recently is talk of mandatory HIV testing in California and I believe that conversation began at the State Department of Health, Office of AIDS.  Our care and treatment infrastructure in California is about to be destroyed, after many successes in HIV care because of the proposed changes in the RWCA and proposed changes on how federal funding is allocated.

Over 90% of all people living with HIV and on retrovirals (in California's 9 Title I EMA's) are registering non-detectable viral loads.  Last year in Sonoma County, nine HIV positive women, client patients of the Center of HIV Prevention and Care and the Russian River Health Center, chose to start families.  This includes delivering HIV negative babies, being there to see those babies graduate from High School and dancing at those babies weddings.  Every new mother in this group delivered an HIV negative baby.  With continued care and treatment, those families can see their HIV negative children graduate from High School.

Another issue I find distrubing is the 2005 Epidemiology report of Sonoma County www.sonoma-county.org/health/ph/hiv/data.htm.  In this report the data collected shows the high risk trending away from gay and bi-sexual men (who held the #1 position in high risk for 25 years) to women who report heterosexual contact, as being the highest risk.  Hispanic families are the second highest risk.  An article written by Katy Hillenmeyer in the Santa Rosa Press Democrat (a New York Times Company), called Sonoma County Renews Latino HIV Education can be found in my web site www.Commission-on-AIDS.org.  This article can be found in the LATINO SERVICES section of the site.

There are 1.1 million persons living with HIV/AIDS in the United States and an estimated 40,000 new infections each year.  When I tested HIV positive in 1994, it was pointed out that over 60% of all gay men living in metropolitan areas in the U.S. are HIV positive, whether they know it or not.  I was interviewed at the Positive Resource Center in San Francisco about 4 years ago, the statement that 60% of all gay men living in metropolitan areas in the U.S. are HIV positive, whether they know it or not was used.  That figure held in check for almost 10 years but real progress is not being made.  I would have expected Senator Clinton to be on this issue.

These are the primary reasons I believe HIV testing should be mandatory from birth in every state, in Guam, Puerto Rico and the U.S. Virgin Islands.  Have the best day
Michael

Offline Oceanbeach

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Re: Op-Ed in NY Times on HIV testing
« Reply #7 on: June 07, 2006, 05:37:52 PM »
Dear David NC and Iggy,

You have some valid concerns that were expressed during the beginning of the Names-based reporting measure during the recent months.  I have seen articles in the Chicago Sun Times, the New York Times, the L.A. Times and the Denver Post which reflect the concerns of thousands of people who wish to remain anonymous.

Forum member TOM H provided a Community Sign-on letter to Robert S. Jannsen MD, Director, HIV/AIDS Prevention, in the forums.  I have included a link to this letter on the front page of my web site www.Commission-on-AIDS.org.  Have the best day
Michael
« Last Edit: June 07, 2006, 05:40:28 PM by Sonomabeach »

Offline pozniceguy

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Re: Op-Ed in NY Times on HIV testing
« Reply #8 on: June 07, 2006, 06:58:21 PM »
I live in a state with mandatory reporting as well ( TEXAS  )  yes there are anonymous clinics but a soon as you are treated by a Dr your name is reported....for that matter when you buy meds you become another official record , if you have employer insurance you can be sure someone at your place of employment knows your status , If you have any agency support ( state, federal or private ) then there is a record of your status ,   the only thing that is not done is that your status is not reported to those who could most use it , like EMT / emergency room crews ( who probably have more legitimate use  than most others)  so I don't see any current issue with widespread testing availability and in some cases mandatory testing.
 By and large when there is openess and acceptance as a "treatable disease" the "fear factor" goes away....
remember the good times...honor the past but don't live there
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Offline newt

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Re: Op-Ed in NY Times on HIV testing
« Reply #9 on: June 08, 2006, 07:02:58 AM »
It's a good piece, good on you Peter for wrioting it and on the NY Times for running it.

Testing is becoming routine in the UK, it is recommended as a standard test on request for GPs now under many circumstances.  It is in most STI clinics a routine "opt out" test. Most A&E depts will do it for 18-65 yr olds without asking, in many circumstances, eg suspected meningitis, TB.

However,  it seems many people's heads have yet to catch up with the medicine.  Many people in the UK are still diagnosed with a CD4 under 200 (plus PCP, etc etc).  There is no culture of routine testing.

We don't do the named notification thing here.

- matt
« Last Edit: June 08, 2006, 07:04:32 AM by newt »
"The object is to be a well patient, not a good patient"

Offline edfu

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Re: Op-Ed in NY Times on HIV testing
« Reply #10 on: June 08, 2006, 07:22:50 AM »
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. 
« Last Edit: June 08, 2006, 07:29:02 AM by edfu »
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline aztecan

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Re: Op-Ed in NY Times on HIV testing
« Reply #11 on: June 08, 2006, 10:44:25 AM »
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,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Ann

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Re: Op-Ed in NY Times on HIV testing
« Reply #12 on: June 08, 2006, 11:59:12 AM »
Mark,

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....

Ann
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Offline angelb33

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Re: Op-Ed in NY Times on HIV testing
« Reply #13 on: June 08, 2006, 04:57:56 PM »
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
rights.
>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.

Offline KellyScott

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Re: Op-Ed in NY Times on HIV testing
« Reply #14 on: August 05, 2006, 03:06:05 PM »
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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