Introduction

[darren333]

Hi all,

First of all, I just want to make it clear that I have just tested negative for HIV (which I hope isn't an issue). Whilst I've been a hypochondriac for years, I had taken some risks and hadn't been tested for 4 years until last week. Stupid I know, but I simply got lucky.

With my mind racing the last few days due to slow results, I've done a lot of research into the subject and I'll try to list the main points I've learned (please correct anything that is wrong)

• HIV is very difficult to contract and pass on, and more or less impossible to pass on if your viral load is undetectable.
  
  Oral sex is very very low risk for HIV.
  
  HIV is not a death sentence like in the 80s, but it's hardly a walk in the park and many doctors are guilty of downplaying it? That said the vast majority of those infected will live healthy normal lifespans.

However, despite all this. It seems so many people are unaware of the advancements and the stigma is still out there. I'm 25 and even some of my older friends think it's a "gay disease".

My question is, what can I do to help raise awareness and combat this stigma? I want to do this as this is something that can affect anyone. Yes I'm HIV negative, but even if I was positive I would still be the same man.

Best wishes to you all,
Darren

[Jim Allen]

Okay.

Your questions or reason for posting does not seem to be regarding the prevention of HIV and see that is the limit of your membership here in the "prevention section" about "HIV prevention"

Your welcome to read the forum, but I don't think you should be posting unless you have a prevention question for yourself.

HIV is very difficult to contract and pass on, and more or less impossible to pass on if your viral load in undetectable.

20 years of studies, no infections when someone has been on treatment and UD (Undetectable blood levels of HIV) for more than 6 months and maintains treatment.

Its more than just "Less impossible" this is dramatically understating the reduction in risk, its actually virtually 0 to the point the burden of the argument scientifically or medically speaking at this stage is now should be challenged to the other-foot of the story, in other-words the risk is 0 until proven otherwise.

U=U messages as a result so ‘Undetectable Equals Untransmittable’ has been endorsed by more than 600 organizations from 75 countries

Oral sex is very very low risk for HIV

Define the act, oral is too vague and some oral simply has no risk as in none. Oral is a shit and lazy term causing misunderstanding and leading people to still fear basic things by taking the term out of context like sharing forks or a kiss on the cheek.

HIV is not a death sentence like in the 80s, but it's hardly a walk in the park and many doctors are guilty of downplaying it? That said the vast majority of those infected will live healthy normal lifespans.

It leads to the death of over 1 million people each year including people in developed nations locations like the USA and the EU.

If you go by total numbers than more people died during the 90's and early 2000's than they did in the 80's, peek was in 2004/2005 and on top of the that still today due to late diagnosis some people do suffer permanent damage before starting treatment as a result. In Ireland nearly 50% are diagnosed late or very late.

On the other-hand for the first-time in history half of the people living with HIV are receiving treatment worldwide but this also means the other half are not risking damage and death. 

Sure walk in the park if you can get diagnosed and than on treatment and before any permanent damage or death occurs . The doctors are not downplaying it at all, medically speaking HIV is very easy to manage and people can expect to live full lives getting this care and in a timely matter is a different story

what can I do to help raise awareness and combat this stigma?

Look I wish you well, here is what you can do educate yourself, don't judge people living with the virus or treat them differently in your life and stay HIV negative.

Use condoms for any intercourse, test at least yearly as standard adult routine for easier to transmit STI's and HIV

https://www.poz.com/basics/hiv-basics/hiv-transmission-risks

Jim


U=U references
http://i-base.info/htb/32308

https://www.preventionaccess.org/consensus

Treatment references
https://forums.poz.com/index.php?topic=68419.0

Data and stats:
http://www.hivireland.ie/wp-content/uploads/Full-Report-HIV-Stigma-2nd-October-2017.pdf
http://www.hpsc.ie/a-z/hivstis/hivandaids/hivdataandreports/HIVIreland_2016.pdf
http://www.who.int 
http://ghdx.healthdata.org/gbd-results-tool   
https://ourworldindata.org/hiv-aids#correlates-determinants-consequences   
https://ecdc.europa.eu/sites/portal/files/documents/AER_for_2015-HIV-AIDS.pdf
http://i-base.info/htb/32308
https://ecdc.europa.eu/sites/portal/files/documents/HIV%20and%20migrants.pdf

[leatherman]

HIV is very difficult to contract and pass on, and more or less impossible to pass on if your viral load is undetectable.

U=U
slowly campaigns are teaching people about PrEP (pre-exposure prophylatic) and TasP (treatment as prevention, see also u=U); but with limited media funds, much media is targeted - which is good that it reaches a target group but bad because it leaves out the general public from learning the message.

Currently the Charlotte TGA is working on another mass media HIV campaign. Last time the theme was "everyone has part in stopping HIV", and this year's theme is education about "Viral Load", "Viral Load Suppression" and "U=U". Our ads cover all 300 city buses and nearly 2 dozen light rail stations. Hopefully, we can get more people to understand these terms, and get rid of some of the stigma and ignorance surrounding this disease.

many doctors are guilty of downplaying it? That said the vast majority of those infected will live healthy normal lifespans.

that's a broad statement against doctors. Providers receiving Ryan White funding (all medical providers treating HIV in the US) are required to have Quality Management programs/committees which regularly review clinic data. Our goals are to determine how to test more and treat more. We aim to get all patients onto treatment and to reach an undetectable viral load. Examining the data often shows problems/issues from the system and patient (transportation to health care, access to meds, misunderstanding about the need for daily adherence, homeless, etc) that we then work to correct. As the quality management teams are made up of doctors, case managers, outreach stadd, administration, and consumers (ie clients/patients), I think no one downplays the problems of UNtreated HIV with their patients.

the misunderstanding here is that UNtreated HIV is a very bad problem that can lead to death; however (and here's why the message is so hard to get across) successfully treated HIV causes very few problems, if any. (it's a crazy mixed-message, I understand, but it's the one we've got. If we could only get everyone tested and treated, we could end this epidemic.) We're actually finding that people living with HIV can be healthier than the general population because their doctors are required to screen them for many other issues than just HIV. Quality health care results in healthy patients.

It seems so many people are unaware of the advancements and the stigma is still out there. I'm 25 and even some of my older friends think it's a "gay disease".

funny how people never look at the big picture. the vast majority of people living with HIV are heterosexual.

My question is, what can I do to help raise awareness and combat this stigma?

personally, I always suggest being a volunteer. I have plenty of HIV- friends who volunteer at local ASOs, prevention organizations, and health centers - from organization fund raisers to working at health fair booths to planning prevention outreach programs to simply putting together condom packets for distribution. It all depends on how much you can, and want, to do. You can always educate your friends, loved ones, and acquaintances or you can do more working to educate the public.

[CaveyUK]

I concur with all the above. Volunteering seems the way to go for the OP.

As for doctors down-playing it...the problem is not in that area, but in the perception that can build up that HIV on it's own is 'not a problem', and that can lead to adherence issues or people not getting tested and starting treatment.

Once treatment starts, well from experience, it's very much a case of life goes on. I'm fitter now than I was pre-diagnosis, am more body aware and critically I don't have the nagging anxiety about actually having HIV anymore which I did for many years before diagnosis. HIV meds have come on more than any other medication I can think of in recent years.

The discovery and development of HIV drugs has been amazing - akin to the discovery and development of antibiotics IMO. What was a killer disease just 35years ago, and a difficult disease to live with just 20 odd years ago has become a completely manageable chronic condition in modern times. There is no way you can downplay that!

[darren333]

Thanks for your replies everyone.

Firstly, I hope no offence was caused by this post. It certainly wasn't intended! Coming from a family with a history of serious illnesses does little to ease my paranoia but it's good to have the facts.

Before recently, my only experience with HIV was the Mark Fowler storyline on Eastenders and Eazy E's case (which probably wasn't even AIDS). My eyes have certainly been opened.

I'll be volunteering at a local "it starts with me" event next month as I really do want to help. Anyway, I shall keep quiet unless I have further questions.

Thanks again,
Darren

[leatherman]

I'll be volunteering at a local "it starts with me" event next month as I really do want to help.

good deal! volunteering (for anything!) is a pretty good deal. Not only do you do something to raise awareness about the issue, but you'll meet people, make friends, and expand what you know about the needs of the people in your community.

another suggestion is the upcoming National (here is the US of A) HIV Testing Day June 27. Find a local testing agency and if you don't want to actually volunteer to help with the event, you can always make sure people you know have gotten tested. Let them know about the need for testing and testing location. You can even help get your friends/co-workers/etc to the agency (ie transportation)

best wishes!