A Day With HIV In America is a photo campaign that encourages people affected by the disease to submit a snapshot for Positively Aware‘s November/December issue, which featuries a cross-section of Americans living in the epidemic’s 30th year. (The deadline for submissions is September 21.)
But are the speakers in this campaign video correct when they say that HIV is “the same as having diabetes” or being short? That you’re “not gonna die from it” or that you can “run marathons and ride 200 miles over two days”? Is HIV really so manageable—or does it come with greater health risks and greater stigmas that should be addressed honestly
SteveC
Aside from the stigma attached to being HIV+ I think that being HIV+ is an easier condition to manage than diabtetes.
I am type 1 diabetic.
Every day I do 4 injections.
Every day I do 4 bloodtests
Every day I have to carefully watch what I eat as if I miss a meal I might keel over into a coma.
In the long run, even if I maintain my diabetes under control I am far more likely to suffer from a stroke; heart attack; go blind, require an amputation, get certain type of cancer; suffer kidney failure …
Even if I maintain good control over my diabetes I am most likely to die at a younger age than my non-diabetic brother.
It irritates me so much when I hear people say that living with HIV is more difficult than living with diabetes.
It would be very nice to only have to pop a few pills for treatment.
As I said already the stigma surrounding HIV is clearly worse than being diabetic.
However in practical, treatment terms being diabetic is a lot more challenging.
SteveC
Clearly the stigma and discrimination is a very difficult thing to manage with HIV.
Practical treatment and care of HIV is no big deal.
Ask any Type 1 diabetic.
Mark
As of 2006, researchers found that (on average) people with AIDS live 24 years. It IS possible to not discriminate against people with AIDS and still speak the truth. It is still a deadly virus that should be taken seriously. People should still be taking all possible measures to prevent AIDS, even if it is much more manageable than it was 20 years ago. Being MORE manageable doesn’t mean it is no big deal- we’re not there yet.
mike128
@Mark: I’d like to know more about that research. With the treatments now available, many people with HIV are able to prevent the disease from developing into full-blown AIDS. So I’m not clear, are your statistics referring to people with HIV, or people who have AIDS?
QJ201
Yeah HIV is manageable like diabetes if you have health insurance or are poor enough to qualify for ADAP.
This add flies right in the face of public health campaigns trying to counter the idea that “HIV is no big deal.” So some guy will see this and go out and bareback because you know, HIV is no big deal.
But HIV is a big deal, even with successful treatment, HIV will make you age faster and shorten your lifespan, then add the stigma and discrimination.
And don’t get me started on the gross profiteering of the drug companies HIV meds.
Poz Guy
If HIV makes you age faster, why do guys always mistake me for a healthy mid-twenties when I’m mid-forties, and have had HIV for 21 years? Most guys my age look like my grandfather. People age more noticeably from being parents!
Yes, the meds now are good if you’ve got access to them, as all should. They’re probably not good for the liver or kidneys in the long run; but I know booze and party drugs are worse, and much more widely consumed.
The social stigma is complete bullshit, way out of proportion to the risk, cowardly. The more I learn about the gay “community”, the less I like it – humanity is in short supply among all the narcissists.
I’d much rather have HIV than diabetes. Neither is preferable; but life itself is a terminable condition, and only a few make it through without experiencing disease at some point.
rick1701
The point of the A Day with HIV in America campaign is to de-stigmatize HIV by saying that whether you’re positive or negative, we are ALL affected by HIV. It’s effort to bring down barriers–positive vs. negative, white vs. minority, gay vs. straight, “us” vs. “them”–by fostering a sense of community by getting everybody to take a picture on the same day, Sept. 21. Glad to see that it’s prompting discussion, so long as this point isn’t lost.
P.S. How did you know that I am HIV-positive AND short?
TMikel
I have lived with HIV since 1984 – I am one of the dinosaurs when it comes to the disease. Since then I have had leukemia ’95-96 – AND lymphoma – 2001 – and have survived both. I developed Type II diabetes from the protease inhibitors which have extended my life but brought other problems. I had my spleen removed in 1996. six years ago I went into renal failure from side effects of Viread and manage to come out of it without dialysis. 1n 1996 I had CEM Retinitis in my left eye and lost most of the vision there. I struggle with high cholesterol and triglycerides even though I am a vegan with a no salt extremely low fat diet. I have suffered from depression. In 2011 I had open heart surgery to repair my aortic valve and double bypass surgery. A subsequent infection of the incision and a bacterial infection of my blood nearly killed me and I spent two months on a wound vac and IV pump. I have been in disability since March 17, 1994 and I assure you that every day is a struggle and that I must recommit to living. Of the more than 70 good friends that I had when this epidemic began, including my partner or 22 years, I am the ONLY one still alive. SteveC, I disagree with you. I fully understand that ravages of Type I diabetes, but what you go through is NOTHING compared to long term HIV survival! Furthermore, I too test my blood four times a day and inject insulin four times a day. Also, you do NOT live with the stigma of a person with HIV! It is not a matter of POPPING A FEW PILLS! I have been on as many as 14 a day and ALL with side effects. How DARE you compare your suffering to those with HIV. It is ill done, sir, ill done!
Allen D.
@SteveC: Same here and agreed. Throw HIV on top of our Type 1-ness & we’d basically be dead in a couple years.
I was diagnosed with the ‘betes 22 years ago. The doctors told my parents that I wouldn’t see 30. But, still here at 32. Can’t seem to get an A1C below 8. So, my doctor has recently informed me that I *might* see 50. But even if I do, I’ll probably be blind and impotent. Sounds super.
QJ201
@Poz Guy: in all illnesses there are variations in progression and treatment, but there have been several reports on how HIV accelerates the aging process
http://www.medscape.com/viewarticle/716221
http://www.sciencedaily.com/releases/2011/06/110626145257.htm
Mark
As a nurse whos seen both, in the current day HIV and diabetes are very similar minus the stigma you see in HIV. The bottom line is these days both diseases are manageable. However no matter how well you manage them once older age starts setting in +55, both diseases are nasty and will ravage you. And tmikelmnot to downplay your illness and I feel for you but virtually every complication you described aside from the blood cancers are also seen in diabetics. In fact since you contracted the disease when treatment was limited your experiences are a bit worse. Both diseases are very vicious.
Mitch
This entire thread exemplifies how b@tsh!t insane the entire discourse surrounding HIV has become…
…from the happy go lucky pozzie in the video who declares “I was using drugs, but now I’ve re-evaluated my life”… ITS A FREAKING STD, who the hell gets Syph and suddenly has some grand moral epiphany?…
…to the apples and oranges comparison to diabetes and the ongoing fight about who has suffered more from their affliction…
…to the antiquidated and contrived statistic that people with HIV live “on average 24 years”…
…to Queerty’s schadenfreude at inviting a “discussion” about whether HIV is really no big deal…
NONE of you seem to have any grasp of what HIV means.
Wanna know why? BECAUSE “THE COCKTAIL” HASN’T BEEN AROUND FOR MORE THAN ABOUT 15 YEARS.
For all we know, the rosiest estimates about pozzies living out “the normal course of our lives” might prove completely true, or we might all start developing premature dementia on our 16th year. We just don’t know what the future holds with this virus, and any attempts to divine it should sound utterly ridiculous as, well, any other attempt to predict the future.
Shannon1981
Serophobia is a problem, a big one, and I applaud any efforts to get rid of it. There is still lots of ignorance out there, especially in certain areas where it is coupled with intense homophobia, that makes being both gay and poz hell on earth.
However, it isn’t “no big deal.” It is still something that there is no cure for. So it is pretty grossly irresponsible to make efforts to have people thinking that way. Both diabetes and HIV/AIDS have the potential to kill, or, rather, the resulting complications do. The comparison is apples to oranges, though.
MikeE
@jason: Hey, Jason: fuck you asshole.
NONE of the people I know who are HIV+ were in ill health, or did drugs, or drank alcohol. They were all very healthy, athletic people. None were particularly slutty.
I was raped when I was 20. I never did drugs, never drank. And let me tell you, you’re a fucking idiot if you think that “HIV has been around for millions of years”. There’s no proof of that, and you’re a moron if you are trying to convince yourself of it.
Keep repeating that HIV doesn’t cause AIDS all you want. It won’t change the fact that it DOES. Go on, fell morally superior all you want. Blame other people’s “lifestyle choices” for getting HIV or AIDS. You’re still a moron. Sadly, no one can blame THAT on a virus.
Mitch
@MikeE: MikeE, Queerty is ground zero for online gay serophobia and most of its comments should be taken with a grain of salt. The really sad thing is that the comments you’ve responded to are actually pretty tame compared to some of the non-dissident viewpoints I’ve seen expressed on here and in real life. You strike me as being fairly young, so let me just cut to the chase and explain what everyone who is poz eventually learns…
1) The biggest a$$holes in the room in any discussion of HIV are seronegative gay men, partly because throwing people under the bus has come to pass as sport in gay culture, and partly because they want to believe that it won’t happen to them.
2) Barring a scientific breakthrough or a life of celibacy, it’ll probably happen to about half of them eventually.
3) Many of them are in complete denial about the extent of the epidemic and so they deal with it by avoiding testing until it is “too late”, which is why people routinely present in Emergency Rooms with a handful of T cells and advanced pneumonia or neuroaids. This is part of the reason why that “24 year” life expectancy is technically correct.
personally
I do worry a lot about dementia.
what's a condom?
@Mitch: “Barring a scientific breakthrough or a life of celibacy, it’ll probably happen to about half of them eventually.”
Yes, if only there were some way to prevent AIDS other than never having sex again.
Maybe someday someone will invent something.
MikeE
@Mitch: actually, I’m in my late 40’s, and have been HIV+ since my early 20s (technically, over that “24 year life expectancy” line now).
I’m just VERY angry to read comments like Jason’s. People like him are the “birthers” of the gay community. Denying that HIV is causative in the development of AIDS is criminally irresponsible. Anyone espousing that rhetoric should be rounded up and arrested and jailed.
For the time being, all of my health issues have been medication side-effects, with an occasional episode of thrush if/when I get a bout of the flu or a cold.
I get angry when I hear people bitch and whine about diabetes, and how hard their lives are. It’s another disease. Why are you comparing it to HIV? BOTH are hard to live with in the long run.
My “handful of pills” are destroying my liver. If I forget to take that handful of pills once too often, I risk destroying their usefulness.
Every time my doctor changes a pill in my cocktail, it’s months of weekly hospital visits to make sure that nothing serious is going to happen.
And every time I try a new medication, it knocks some other med off the “possible treatment” list.
Every time I am put on a new medication, it’s months of nauseating and painful side effects, and no guarantee that those side effects will actually abate, meaning no guarantee that I will end up actually STAYING on those meds.
All those “it’s just a handful of pills” people don’t seem to realize that the drug cocktails are incredibly complicated to put together when you’ve been poz for more than a few years. If you’ve used a certain class of drugs and it has lost its effectiveness, that basically bars every other drug in that class from your treatment for many years. My hospital has a board of doctors who get together and TRY to work out drug schedules for their patients, and they say it’s the most difficult thing they do. It’s like an incredibly complex crossword puzzle, with someone’s life in the balance.
I’ve watched every single gay friend of my generation I’ve ever had die from AIDS-related complications. My husband, also HIV+ and infected in his teens, and I are still relatively “healthy”. We count our blessings every day.
My suspicion is that even at the start of the epidemic, there were different strains of HIV, some more virulent than others. It’s a theory, nothing more, but it could be why some people got sick so fast and died, while others didn’t.
I knew a man, a very close friend, who came out of the closet in his 40’s. He was married, he had a family and all that goes with it. And I knew him BEFORE he came out. He wasn’t “on the down low” (is that the correct expression?). His first gay experience was after he came out, and it really WAS his first. And within 6 months of coming out, he was HIV+, within a month of that had AIDS, and a month later was dead.
He wasn’t a drug user, nor a drinker, he wasn’t particularly “slutty” (a handful of partners within 6 months isn’t my idea of “slutty”), and still.
Those who so loudly proclaim that “lifestyle, drugs, and alcohol” are the major contributing factors in AIDS, are liars. Outright liars. That or complete idiots who should just shut the fuck up because they don’t know shit about medicine.
A VIRUS causes AIDS. That virus destroys your immune system. Period. That’s all. Once your immune system is heavily compromised, you catch every little thing that passes.
Yeah, technically, “HIV doesn’t kill you”.
Except “HIV brings about the condition that DOES kill you”.
Sure! guns don’t kill people.
But the condition brought about by putting a gun in someone’s hand DOES.
So in the end, yes, guns kill people.
There is a direct causal relationship.
HIV in a test tube won’t kill anyone. Neither will Anthrax or Smallpox… in a test tube.
I’ve gone on long enough.
Maybe it’s time I stopped reading the comments on this fucking blog.
Its called a a brain
@what’s a condom?: Yeah, hate to break it to you Skippy, but porn, your local aids prevention nazis and Queer as Folk lied to you, condoms aren’t perfect. Condoms are only as effective as both partners’ willingness to use them. Correctly. Without a break or a slip. For every single act, probably including oral. Ever barebacked with a long term partner? I got news, that guy might have cheated. Ever felt amorous while drunk? You’re not in as much control as you’d like to believe. Thanks for the douchbaggery though. Its always good to have fresh illustrations of how the cult of latex has become counterproductive. Good luck at your next test, if you even bother.
Fashion Finder
@PozGuy: Who is mistaking you for that? Gay men all over town claim that everyone thinks they look 20 years younger. PLEASE! UGH. People just like to be nice to you. I doubt you really look 20 years younger. Hmm, those meds are causing you more delusion that physical healing.
TMikel
To all of you who DO read and monitor the comments on this site, we owe you a debt of gratitude! Please do not stop reading. There have been those who deny a connection between HIV and AIDS for decades. This may allow them a false sense of security – I cannot say. Serious illness is always hard to live with and as one experiences ever more complications, it becomes harder to retain a positive attitude. It only takes ONE unprotected encounter to contract HIV – ONE. Yet there are thousands who refuse to take precaution. Mark – as a nurse your comment that, “The bottom line is these days both diseases are manageable” serves no purpose whatsover. I dare say blindness is managable. I dare say the loss of limbs due to poor circulation is managable. I suppose you could even say that demntia is managable. If you can find compassion in your heart, forgive me for wanting to live as long as possible with as much energy, ability, and reasonable health as I can. However, should I need hozitalization again, understand that I do not want you to have aby part of my care. I find your philosophy quite appalling. I remind everyone that he or she has the legal right to forbid any health care worker – doctors, nurses, phlebotonists, aides, and so forth to have access to them. If you encounter someone who preaches at you, cannot seem to draw blood without unnecessary pain, neglects your room – report them and forbid them entry again. One such stand can improve the quality of your care a great deal. I know.
B
No. 13 · Mitch wrote, “We just don’t know what the future holds with this virus, and any attempts to divine it should sound utterly ridiculous as, well, any other attempt to predict the future.”
I’d disagree with that in one respect. We’ll make a hell of a lot more progress in the next 5 to 10 years than we did in the previous 5 to 10 years. Read this article (about the SARS virus) for an example: http://www.deseretnews.com/article/976625/Gene-chip-helps-identify-SARS-virus.html
Technical advances, including significant improvements in computer speed and memory, are getting us to the point were we can do a first cut at evaluating drugs on a computer: we understand the basic principles of how molecules interact and have for years, but for the large, complex molecules involved in biology, up to now it has been computationally infeasible to produce really accurate models. We are approaching the point where this will no longer be the case. That will speed up the process of developing new drugs significantly. There’s real money behind it too: check out http://www.darpa.mil/WorkArea/DownloadAsset.aspx?id=2571 for an example from several years ago (the higher computer performance is needed in a number of critical areas, not just HIV/AIDS research, so we don’t have to worry about them shortchanging it on the grounds that it is only a “gay” issue).
There are no guarantees, but I wouldn’t be surprised if we develop much improved treatments, and maybe a cure, in the next 5 to 10 years, mostly because what we can now do in one year would have taken at least 10 years a decade or two ago.
Dave
What did Jason write? I don’t see his post.
Diabetes Care
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