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Author Topic: Reporting VL below 200 - “harmful medical practice”  (Read 2425 times)

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Offline Jim Allen

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Reporting VL below 200 - “harmful medical practice”
« on: January 04, 2024, 06:01:43 am »
Aidsmap full article: https://www.aidsmap.com/news/jan-2024/giving-figure-hiv-viral-load-below-200-harmful-medical-practice

In Brief:

Quote
As HIV RNA tests become ever more capable of detecting minute quantities of the virus, health care providers and laboratories should be more mindful of how viral load results can be misinterpreted in the era of 'Undetectable equals Untransmittable' (U=U).

Although HIV is not passed on through sex with a viral load below 200 copies/ml, people living with HIV may received lab reports showing that their result as, for example, "HIV-1 RNA detected, 35 copies/ml" and be confused about whether U=U applies to them, argue Maria Rodriguez and colleagues at the University of Miami in the journal Open Forum Infectious Diseases.

For example, Abbott's RealTime viral load assay has a "lower limit of detection" of 40 copies/ml.

Using this test, a patient might have their viral load reported as "not detected", which indicates that the assay was unable to detect any virus in the blood sample tested. Alternatively, their result might be reported as "<40 copies/ml", which indicates that the test picked up a tiny trace of HIV, which was too small for the test to give an accurate estimate of the number of copies.

Other people's results might give a specific figure, indicating how many copies of the virus were in the blood sample, for example 50 copies/ml or 100 copies/ml.

The authors say this can be confusing for people living with HIV.

"Because viral loads deemed detectable but <200 copies/mL have not demonstrated meaningful clinical implications, and have the potential to cause confusion and mistrust among patients and providers alike, we consider reporting these values to be a harmful medical practice with a negative public health message," they say.

They recommend exploring new ways to report and discuss viral load results with patients. One option would be for the laboratory report to include the words "no risk of sexual transmission" when viral load is below 200 copies/ml. Alternatively, all viral loads below this level could be automatically reported as "undetectable", with the precise value hidden but available to clinicians to disclose with further explanation if needed.

References
Rodriguez MG et al. The Perils of Overly Sensitive Viral Load Testing for Persons With Human Immunodeficiency Virus, Open Forum Infectious Diseases 10: ofad494, 2023 (open access). https://doi.org/10.1093/ofid/ofad494
« Last Edit: January 04, 2024, 06:21:03 am by Jim Allen »
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Offline Jim Allen

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Re: Reporting VL below 200 - “harmful medical practice”
« Reply #1 on: January 04, 2024, 06:05:55 am »
We have literally had thousands of posts on this topic over the years. Just search "Blips", and you will find most of them.

Mostly its newbies freaking out over a detected VL less than 20/50 or 200 depending on the lab used, and often after clinic or healthcare providers fail to give clear context or reassurance about results or explain the goal of starting treatment, leaving the HIV community (not only here) to explain these things to those with concerns.

I firmly disagree with this: "
Quote
health care providers and laboratories should be more mindful of how viral load results can be misinterpreted in the era of 'Undetectable equals Untransmittable' (U=U)
."

Quote
One option would be for the laboratory report to include the words "no risk of sexual transmission

It's lazy; they should have always been mindful, and it's been an issue since way before the U=U slogan was even a thing; this statement gives U=U and sex too much credit and lets healthcare workers off the hook; papers have continuously been published over the years on the topic of clinical irrelevance of blips, defective copies, TaSP, etc.,

I've said before they should not tell patients a few times, but this lets them off the hook and explaining the treatment goals, what to expect and what isn't an issue is only a 2-minute conversation; trust me, we have had to have those conversations thousands of times already with people stressed over nothing, and people are not stupid, and I think the aim should be making sure this is better communicated by clinicians, not hiding or withholding results.

I don't mind simplifying reporting, but parts of this article and the statements piss me off.
« Last Edit: January 04, 2024, 06:39:23 am by Jim Allen »
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Offline leatherman

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Re: Reporting VL below 200 - “harmful medical practice”
« Reply #2 on: January 04, 2024, 09:58:05 am »
while "<200 = U" doesn't have the panache of "U = U", the word "Undetectable" is just so inaccurate. "not detected", "<20 detected", or even "180" are all representative of successful treatment and not being able to transmit HIV. Not to mention that a single result is just a snapshot of the results at that blood draw, and a truer picture to judge treatment should be based on the trend over several tests. Confusion over results <200 often leads those with blips, or those who have been unable to sustain an "undetectable" viral load, to think their treatment inadequate....or even themselves of being "at fault" for being unable to reach and sustain an "undetectable" status.

people are not stupid...
...the aim should be making sure this is better communicated by clinicians, not hiding or withholding results.
patients are not stupid....
.... and if they are ignorant about the fine points of HIV treatment, then they should be educated.

For many years, I worked as a consumer advocate with an incredible Ryan White Quality Management director. We put together a handful of education campaigns over the years to educate patients on different quality measurements that were tracked. Our belief was that if patients/consumers understood how the system was designed to provide successful HIV health care, patients/PLHIV would know what they could do to help themselves get proper health care. For an example, one campaign discussed the concepts of Medical Visit Gap (time between medical appointments), Retention in Care, and Medical Visit Frequency, and how those numbers helped determine if people were receiving enough care, receiving timely care, and not falling out of care. Other campaigns discussed testing and treatment for other STIs, and screening for mental health and substance abuse (since these could adversely affect treatment adherence).

I think by posts we have here, we see that too often doctors don't help educate patients about these issues. We also see that within several replies, it's quite easy to educate PLHIV about these things. ..... Although it is a harder to get them to loss their fear and/or self-stigma about having a <200 viral load count.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jim Allen

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Re: Reporting VL below 200 - “harmful medical practice”
« Reply #3 on: January 04, 2024, 10:14:03 am »
we see that too often doctors don't help educate patients about these issues. We also see that within several replies, it's quite easy to educate PLHIV about these things. ..... Although it is a harder to get them to loss their fear and/or self-stigma about having a <200 viral load count.

100%

Now if PLHIV were given the correct expectations and context about treatment and VL by their healthcare providers from the start, there would not be this fear and angst later on down the road or the need to (re)educate PLHIV late/too late.

Quote
the word "Undetectable" is just so inaccurate

Absolutely. This term should have been replaced in patient communication and lab reports accessible to PLHIV many, many years ago. I agree it's inaccurate, it sets incorrect expectations and is no good at all. 
Even U=U is confusing and misunderstood in part because it uses "Undetectable" a term that's unclear, misused and misunderstood, but that's a somewhat different topic, so I will leave it at that on U=U and rant about it another day in another thread.  ;D

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Offline kentfrat1783

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Re: Reporting VL below 200 - “harmful medical practice”
« Reply #4 on: January 04, 2024, 07:36:06 pm »
There needs to be a conversation with your doctor about what the numbers "mean" and not just "you are doing great".

I get told time and time again that my numbers are good, nothing to worry about, and they are learning that I print my tests and ask specifics on the "blips", oddities, or what else I could be doing. 

I also know most of the time the doctors don't have the time to go into detail but I would hate it is they didn't report actual numbers such as <20 copies, 75 copies, 15 copies, etc.  Then again depending on what lab you get the tests done at it can change reporting so being accurate with numbers is key. 

No need to change the reporting.

Quote
One option would be for the laboratory report to include the words "no risk of sexual transmission" when viral load is below 200 copies/ml.

I can see this as being a new wave of lawsuits in the US.  Maybe no risk to suxual transmission of HIV, but someone could construe this as no risk of ANY sexual STD/STI.  Or someone stops taking their meds as they think they don't need them anymore and then the doctors are sued.  Yes, the US is sue happy. 
Date - CD4 - Percent - VL
08/23/23 - 366 - 26%
06/20/23 - 349 - 21% - UD
04/15/23 - 229 - 19% - <20
11/14/22 - 486 - 24% - 73
10/12/22 - 316 - 19% - <20
06/20/22 - 292 - 21% - <20
01/25/22 - 321 - 22% - <20
09/22/21 - 278 - 19% - <20
02/02/21 - 225 - 19% - <20
06/08/20 - 257 - 20% - <20
03/17/20 - 285 - 19% - 101 (2.00)
12/17/19 - 290 - 20% - <20
09/17/19 - 218 - 16%
06/18/19 - 173 - 16% - <20
03/13/19 - 170 - 16% - <20
January 2019 - Started Triumeq
12/05/08 - 174 - 18% - <20
08/28/18 - 166 - 15% - <20
05/08/18 - 106 - 11% - <20
03/05/18 -   90 - 10% - <20
12/11/17 -   60 -   8%
09/07/17 -   42 -   6% - 54 (1.70)
May 2017 - Started Atripla
05/11/17 -    2 -    1% - 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: US

Offline leatherman

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Re: Reporting VL below 200 - “harmful medical practice”
« Reply #5 on: January 04, 2024, 08:52:38 pm »
not just "you are doing great"
...
I also know most of the time the doctors don't have the time to go into detail
except almost all providers who treat PLHIV in the USA receive federal funding through the Ryan White program and have had to adhere to Ryan White quality standards. Not to mention the federal ACA requirements. These standards require providers to block 15-20mins per patient. That's plenty of time to tell a patient, "Your VL was 50 copies this time; but as long as that count remains under 200 HIV is being kept under control and you cannot transmit HIV. Of course, even though this number isn't "bad", we'll make sure to keep an eye out over the next couple of visits and lab work to make sure your viral load doesn't continue to rise or go over 200."

I think the provider still has 14-19mins left in the medical visit. ;) :)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jim Allen

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Re: Reporting VL below 200 - “harmful medical practice”
« Reply #6 on: January 05, 2024, 01:52:01 am »
Interesting

Quote
I also know most of the time the doctors don't have the time to go into detail but I would hate it is they didn't report actual numbers such as <20 copies, 75 copies, 15 copies, etc.

I fully agree, and time is short.

Quote
That's plenty of time to tell a patient, "Your VL was 50 copies this time; but as long as that count remains under 200 HIV is being kept under control and you cannot transmit HIV. Of course, even though this number isn't "bad", we'll make sure to keep an eye out over the next couple of visits and lab work to make sure your viral load doesn't continue to rise or go over 200."

This. I think the issue comes back to communicating we need to all be "undetectable" when that's not the case. Test results can show "detected" even when it's below the test threshold to count the copies, let alone 200.

If "undetectable" as a vague goal and term were scrapped in HIV treatment and when starting treatment, a correct goal/expectation was set, then follow-up appointments and results down the line would not take any real additional time to communicate.
« Last Edit: January 05, 2024, 03:37:14 am by Jim Allen »
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Offline daveR

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Re: Reporting VL below 200 - “harmful medical practice”
« Reply #7 on: January 05, 2024, 04:46:20 am »
Guilty as charged at freaking out over negligible viral blips.  :'( :'(

Offline Jim Allen

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Re: Reporting VL below 200 - “harmful medical practice”
« Reply #8 on: January 28, 2024, 03:30:29 pm »
This topic is still rattling around in my brain... I'm not sure why.
I think it might be something I want to take on and advocate change. 
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