False Positive is not the same as worried well

[pauldecle]

Dear Community Members,

I would like to clarify that my previous message about postings from the worried well was not in any way an attack or a dismissal of the issue of false positive test results.

Getting a positive diagnoses for HIV is a life changing experience for all of us that have gone through it. Finding out later that the diagnoses was incorrect cannot detract from having been told that you have HIV in the first instance. Approximately 15 out of every 1,000 test (1.5%) give a false positive result.

I have written to Vinny privately to apologise for any confusion regarding the issues of the worried well and getting a false positive test result. I have also given Vinniy what guidance I can to get more focused information and support.

Given the perceived confusion about my previous posting I fully understand the distain and concern raised by some members who mistakenly thought I was talking about Vinny and his situation of getting a false positive test result. This was not my intention in any way and I whole heartedly apologise for any misunderstanding or confusion.

I do however stand by my comments regarding the worried well and feeling the HIV Partners Community is not the right place for this issue. I feel it is a very complex and specialised issue that speaks more to psychological issues than to HIV. I do not say this as a self defined deity but rather as the founder and administrator of HIV Partners and with the intention to further build on the excellent support and advice we, collectively, continue to provide for each other.

[Griffon]

But Vinny did not have a false positive test result - ALL his test results were negative !

[pauldecle Partner ForumLink]

To answer your question directly, I am a 57 year old gay white man living in london, England and yes I remember all too well the days of losing many, many friends, companions and roll models to the ravages of AIDS. I have also been living with HIV for over 20 years so had to navigate the pathway from having a terminal diagnoses to living with a chronic condition.

There are many factors that could explain a rise in the number of newly diagnosed in your country not least the massive cuts in funding for HIV that Mr Trump seems to be hell bent on introducing. Here in the UK we have for the first time in 2015 seen a dramatic drop in the numbers of newly diagnosed cases at least in the major conurbation's within the gay and bisexual communities. It has also to be noted that we have much higher rates of people getting tested, engaged with treatment services, on medication and with fully suppressed viral replication, this along with the availability of PrEP at very low or no cost to prevent HIV infection could also contribute to this drop in infection rates.

While I recognise the very small number of false test results, it is important to keep in mind these are very small numbers (1.5% for false positives and less than 1.2% for false negatives).

The benefits of regular testing, diagnoses and treatment cannot be understated both to the individual and to the larger community. The START study showed that HIV treatment has important benefits for ones health, even if your CD4 count is still high. This international study was one of the most important HIV studies from the last ten years. WHO guidelines now call for ‘test and treat’ strategies – initiating all people diagnosed with HIV on ART as soon as possible after diagnosis – as a way to decrease community viral load and reduce the rate of new HIV infections. These two exciting developments rely on individuals knowing their HIV status.

I, personally have reservations about calling in to doubt the effectiveness of HIV tests.

I would also like to reiterate that while the HIV Partners Community welcomes members from across the globe it has, since inception, been and remains a UK based and focused HIV community group dedicated to supporting those living with HIV. Health care systems and provision differ across nations and this community has to recognise these differences but we are committed to maintaining this UK/European focus. The healthcare systems and access to treatments are closer aligned within Europe than they are with the situation in North America.

[Griffon]

The problem is there are no specific symptoms that indicate a newly acquired HIV infection . Running a temperature , aching limbs , diarrhoea etc. are very general to any infection . With HIV it would seem that in many cases there are no symptoms at all .

Casting doubts on the accuracy of the present HIV tests , without any evidence that they are unreliable , does not help people's confidence .

There are people posting here who are almost certainly not infected from the low risk sexual encounters that they have had , but who have convinced themselves that the flu symptoms that they are experiencing are really something much more serious . Suggesting to these people that their negative test results are unreliable only serves to increase their mental torture .

[Griffon]

There have been approximately 120 new HIV cases confirmed in Milwaukee .

Milwaukee also rates as having the highest rate of other sexually transmitted diseases in the U.S. .

There is an established correlation between STI's and HIV infection , so this is the most likely cause of the current outbreak .

Unless there is some sort of proof , such as all the new HIV victims having been tested negative previously before becoming ill , I can not see how anyone can claim that the present tests are not working ? Especially as I assume that all the new infections have been identified by using the standard test !

[Griffon]

Thank you for your good wishes Positive .

One thing I forgot to point out with reference to events in Milwaukee , is that the current spate of new infections are amongst one particular ethnic age group .

If these young men are engaged in unprotected sex amongst their own peer group , and they must have done for them to become infected , then that is a logical explanation for the Milwaukee HIV outbreak .

[Griffon]

Umm - where have I tried to tell you that Truvada and the drug being used for PrEP are not the same thing ? Please show me where I have said this .

If Truvada is prescribed for PrEP then that's what it is . If another drug is prescribed then it is what ever the other drug is .

The facts of what is happening in Milwaukee are easily looked up . Please explain to me how the new HIV infections are being diagnosed if the standard test is not working ? Please explain what facts you base the opinion that the present HIV tests no longer work for detecting the current virus .

I do not want to hear what your doctor may or may not have said , science is based on facts . Scaremongering is based on hearsay .

[Angelina1]

I agree with Paul Decle's comments regarding the fact that the HIV Partners Community being best placed to respond to people with a confirmed HIV positive diagnosis. There are plenty of other forums dedicated to and much better placed to responding to queries from people who are not diagnosed but clearly worried about potential risk of having acquired HIV. The HIV i-base website is one of resource which has clear guidance on risks of transmission and a excellent list frequently asked questions.