POZ Community Forums
Main Forums => Living With HIV => Topic started by: pacerintl on June 08, 2011, 02:25:43 pm
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http://yourlife.usatoday.com/health/story/2011/06/Many-with-HIV-dont-know-they-have-it/48171302/1?csp=hf
This just crazy...'well I didn't know.'
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And these are the ones they know about...what about everyone else?
It's time for mandatory testing for everyone because too many people won't do it. They go on infcting others...how many of you were infected by someone else? Someone that shold have known.
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Alternatively it's time for decent, affordable health care and promotion of easy access and routine testing.
That people in the US can't get timely treatment til they are nearly dead if they are poor or underinsured, and sometimes have to wait for it, is akin to medical slavery to my my mind. There is really no evidence that people with untreated AIDS "go on infecting others" as a rule. They's prob too poorly to go out and score in a big way.
Now where's my "D+D free only" seat of the bus?
- matt
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Alternatively it's time for decent, affordable health care and promotion of easy access and routine testing.
That people in the US can't get timely treatment til they are nearly dead if they are poor or underinsured, and sometimes have to wait for it, is akin to medical slavery to my my mind. There is really no evidence that people with untreated AIDS "go on infecting others" as a rule. They's prob too poorly to go out and score in a big way.
Now where's my "D+D free only" seat of the bus?
- matt
You have proof of that? Thats BS!
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How many times has it been said in these forums that the only way to stop infecting your sexual partners is Safe Sex..use the bloody condoms
[quote it's time for decent, affordable health care and promotion of easy access and routine testing][/quote]
I agree with Newt.
Sticking needles into someone's vein against their will is against the law...regardless of what you think peope still have the right to choose.
Aroha
Jan
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I was actually commenting about his statement that poor people in the US have to be near death before they can get treatment. Even with the problems regarding the uninsured, that statement is a bit wild.
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While it's an interesting article, I think the numbers are bogus and miscalculated, and the article is poorly written. But I've always doubted the "1.1 million" number as just a bad projection of the CDC.
"About 236,400 of the 1.1 million people infected with HIV have not been diagnosed, the CDC says. People who don't know they have HIV are believed to transmit the virus to half of the 56,000 people who become infected each year." What bullshit. Did they watch them having sex to know how often they did it?
If we KNOW there are diagnosed cases of (1.1M - 236,400 = 863,600), we also know these are the people usually trying NOT to infect others. If 56,000 NEW diagnoses come to light each year, then the projections of who is having sex (the 236,400) and how often is just stupid. I don't believe a group of 236,400 is having so much sex that every 4th person they fuck gets HIV, and they're fucking someone new so often. It's just not that easy to transmit. I would postulate that there are really another 800,000 or more undiagnosed cases, and the CDC is afraid to tell us that so they underplay the calculation. It's just politically not a good thing. The 6.5% rate of growth of HIV in the US simply means we discover 6.5% of those infected, either because they got sick, or because it was part of their usual healthcare (probably the former rather than the later).
As purient as the U.S. is about sex, I don't think the average person with undiagnosed HIV (the supposed 236,400) is having so much sex that they can infect 56,000 each year. If it takes 10 years from infection to death in untreated HIV, then we would discover about 10% of that population on average each year as they get to that endpoint. That would mean, minimally, 560,000 would have undiagnosed HIV.
Anyone else thought about these numbers and questioned the CDC? Or should I just have another drink and sit down.
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Alternatively it's time for decent, affordable health care and promotion of easy access and routine testing.
That people in the US can't get timely treatment til they are nearly dead if they are poor or underinsured, and sometimes have to wait for it, is akin to medical slavery to my my mind. There is really no evidence that people with untreated AIDS "go on infecting others" as a rule. They's prob too poorly to go out and score in a big way.
Now where's my "D+D free only" seat of the bus?
- matt
Maybe those that have progressed to AIDS don't go around infecting others, but there's a very good chance that I did before I tested positive. I certainly didn't do it intentionally, as I was unaware of my positive status, but the fact remains that I probably did.
I totally agree about the need for affordable health care. Otherwise, there's little point in knowing one's positive if there's no treatment. I guess one could just hide away and avoid any sort of possibility of infecting others, but that's not likely either. It's definitely a shitty situation for those who don't have insurance and don't qualify for ADAP (and often shitty for those who do due to the varying quality of their providers).
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I was actually commenting about his statement that poor people in the US have to be near death before they can get treatment. Even with the problems regarding the uninsured, that statement is a bit wild.
I read that he said poorly, not poor in that they are doing so un-well that they're not gonna go out and score.
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I was actually commenting about his statement that poor people in the US have to be near death before they can get treatment. Even with the problems regarding the uninsured, that statement is a bit wild.
It may sound a bit wild Bug but we have heard it many times in these forums over the years, the lack of money is killing people, I'm sure it affects some States more than others, but I admit I'm not that up to date on your health system...it's a very sad situation for a lot of people.
David, newt did mean poorly, as in unwell, and not poor.
Aroha
Jan
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I'm sorry if I misunderstood. You are right that it varys by state how the uninsured in the US receive treatment. In the city I live in the largest HIV clinic here treats everyone including the uninsured regardless of their ability to pay. They also follow all US treatment guidlines so that people receive treatment when its recommended.
However, the state I live in doesnt have any waitlists for adap the way some other states do.
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That people in the US can't get timely treatment til they are nearly dead if they are poor or underinsured,
I was actually commenting about his statement that poor people in the US have to be near death before they can get treatment. Even with the problems regarding the uninsured, that statement is a bit wild.
actually the very poor have better access to treatment because they are frequently eligible for state medicaid. (they just have to be poor; being "nearly dead" is not a qualifier to get medicaid) It's the working poor with little or no insurance that have trouble accessing healthcare. For these working poor, ADAP allows them to have access to meds that they wouldn't be able to afford otherwise - which is why ADAP is such an important program.
There is really no evidence that people with untreated AIDS "go on infecting others" as a rule.
I also took issue with this statement. Many of these people progressing to AIDS in 1 yr after diagnosis have gone years living a "normal" life without health issues continuing to have sex, quite possibly infecting others. Many people that take 5 to 10 yrs after infection before getting diagnosed spent years possibly infecting others. While those who know their status are less likely to infect others (because they take precautions to NOT to spread HIV and to serosort), it's these people who do not know their status that are more likely to continue spreading HIV until their health declines to a point at which they are diagnosed late.
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Safe Sex..use the bloody condoms
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No, No, NOOOOO
not the bloody ones!!
;)
Sorry, couldn't help myself. Two countries divided by a common tongue and all that.
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I definitely agree that it is important for those who are sexually active to be aware of their status, but it has to be voluntary, consensual testing - not mandatory, forced testing. As discussed in another thread, it is important that access to treatment is provided.
A recent newsfeed story that is still posted on poz.com discusses Medicaid expanding coverage in some states for expanded HIV/AIDS programs. The letter that is attached to the article states:
"Of those living with HIV, it is estimated that less than 17 percent have private health insurance and nearly 30 percent do not have any medical coverage" (Source: http://www.aids.gov/federal-resources/policies/health-care-reform)
It is imperative that if we want to encourage people to get tested and know their status, that we make sure that they also have access to treatment. Unfortunately, for many people, this is not the case.
First, and foremost, as Ann always says, responsible adults know that it is of utmost importance that they use condoms - particularly if they do not know the status of their partner. Testing and knowing ones status is not going to stop HIV from spreading. Testing, knowing ones status, and receiving treatment also is not going to stop HIV from spreading (although both can have a positive impact) ---- practicing safe sex is the surest way of stopping or severely slowing the spread of the disease ----- "it really is that simple." (Right Ann? ;D)
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As purient as the U.S. is about sex, I don't think the average person with undiagnosed HIV (the supposed 236,400) is having so much sex that they can infect 56,000 each year. If it takes 10 years from infection to death in untreated HIV, then we would discover about 10% of that population on average each year as they get to that endpoint. That would mean, minimally, 560,000 would have undiagnosed HIV.
Anyone else thought about these numbers and questioned the CDC? Or should I just have another drink and sit down.
Richie
That is an interesting way to think about the size of the undiagnosed population. But the actual stats are that about one third are diagnosed very late (like me!). So if we used very late as a rough proxy for 10 years then we'd be getting a long term undiagnosed population of one third of your number which is a little under 190,000. Since the other 2/3rds are diagnosed earlier we might assume they are at the halfway point and estimate 5 years of infection for another 180,000 or so, which totals to 370,00 people.
If one test the assumptions at 8 years to AIDS and 4 years for the halfway mark, you get about 300,000 as an estimate of the undiagnosed.
There are a lot of implicit assumptions in that model, but it would not be an unreasonable way to think about a steady state population model. In real life there's been a lot of work on increased testing, and accounting for that you'd expect a lower number -- heterogeneity in outcomes probably lowers the number too.
So basically, fixing the assumption about when people are diagnosed to better reflect actual data in your steady state model comes up with 300-370K people vs a more sophisticated model that comes up with a little under 240K people. In essence, the CDC number looks pretty good.
A
edited to add -- I'd be glad to buy you a drink and sit down to discuss model building. Sounds like my idea of fun :)
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actually the very poor have better access to treatment because they are frequently eligible for state medicaid. (they just have to be poor; being "nearly dead" is not a qualifier to get medicaid) It's the working poor with little or no insurance that have trouble accessing healthcare. For these working poor, ADAP allows them to have access to meds that they wouldn't be able to afford otherwise - which is why ADAP is such an important program.
In fact that has not been uniformly true in the past. Medicaid is a joint federal / state program where the feds set minimum standards but programs vary widely across the states.
Some states allowed all poor people to access Medicaid, but many states did not and federal law only required that the state Medicaid program cover individuals if they were disabled (later, children were added). Most states covered both poor children and their parents but many did not cover poor people who were not disabled and did not have children. One of the many provisions under the health care reform act addressed this inequity.
Unfortunately the problem goes beyond eligibility for Medicaid -- many people eligible for Medicaid do not take it up. There have been a number of studies on why people do not take Medicaid when they are eligible and it seems to be a mix of lack of knowledge that they are eligible, recent other coverage loss, unwillingness to be singled out as poor, and cost and fear of cost.
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A --
I think you said it for me -- "there are a lot of implicit assumptions in that model..." I guess that's where I disagree with the modeling the CDC is doing as I think it's purposefully conservative in assumptions. There's always a high, medium and low, and I think they advertise the low model each time.
Some day, if testing is broadened someehow, all these unknown HIV cases may bring to light the ~incorrect~ assumptions and lead to a higher overall population number.
Till then, where's my pinot grigio!?
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Till then, where's my pinot grigio!?
Oops -- see edit to my prior post -- I'll buy
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A --
Thanks! I'll hit you up next I'm in Jersey. I worked with actuaries for 25 years (no, I'm not one), but I did pick up a geek thing or two. Sounds like you're a bit of a geek yourself!
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No, No, NOOOOO
not the bloody ones!!
;)
Sorry, couldn't help myself. Two countries divided by a common tongue and all that.
Oops...my bad.. :D
Aroha
Jan :-*
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.
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I know there are alot of different feelings about testing but the fact is if there was mandatory testing AND medication/health care provided AND compulsory taking of the medication the infection rate would go down. I can't find the article, but I remember reading years ago of some modelling based on just this scenario which predicted HIV could be wiped out within a few generations using just existing medications. this was based on all world governments joining in and requiring treatment. If anyone has a link please send it through.
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...how many of you were infected by someone else? Someone that shold have known.
Everyone was infected by someone else. Except needle pricks, I guess.
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Everyone was infected by someone else. Except needle pricks, I guess.
Well and the lucky few who avoided all the stigma by going the toilet seat route.
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Everyone was infected by someone else. Except needle pricks, I guess.
Everyone infected themselves.
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Everyone infected themselves.
Not everyone Space, what about Haemophiliacs before blood transfusions were tested for HIV?, babies born to mothers who didn't know they were infected until after the delivery?..many were innocent and could do nothing to prevent it.
Aroha
Jan :-*
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Not everyone Space, what about Haemophiliacs before blood transfusions were tested for HIV?, babies born to mothers who didn't know they were infected until after the delivery?..many were innocent and could do nothing to prevent it.
Aroha
Jan :-*
Yes, I stand corrected.However, the vast majority of us (including 'immaculate infections' like mine-since i thought i was always safe :o) infected ourselves.
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Not everyone Space, what about Haemophiliacs before blood transfusions were tested for HIV?, babies born to mothers who didn't know they were infected until after the delivery?..many were innocent and could do nothing to prevent it.
I get the point about babies being innocent.
But people who get HIV through sex are not, in constrast, "guilty".
Anyway we are getting off topic. ::)
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http://yourlife.usatoday.com/health/story/2011/06/Many-with-HIV-dont-know-they-have-it/48171302/1?csp=hf
This just crazy...'well I didn't know.'
The title of this thread is misleading. Please add: "After diagnosis..... one in three...."
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A --
Till then, where's my pinot grigio!?
I buy Sutter Home White Zin in bulk, will that work? ;D
Unless we're toasting Ramona, she'd throw a fit without Pinot. Loves me the Housewives.
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People do not infect themselves. They put themselves in situations that increase their risk of becoming infected. Myself included, but they dont infect themselves. What was the point of this thread again?
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What was the point of this thread again?
the same news that it's been for years.
Unless you test enough to find out early, about 1/3 of all HIV/AIDS cases aren't diagnosed until years after being infected, when a person finally starts having health problems and seeks medical care. That means that nearly 1/3 of us find out we're positive because we're so sick already that we ended up in the hospital or seeking medical care, with AIDS, starting meds immediately, and hoping not to die.
I know for me, being in the 33% group, this means I have never really understood the worrying the other 2/3 have about taking meds. When viewed as the life-savers that they are, one really doesn't care too much about side-effects - except the side effect of keeping you alive. ;) :D
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I know there are alot of different feelings about testing but the fact is if there was mandatory testing AND medication/health care provided AND compulsory taking of the medication the infection rate would go down. I can't find the article, but I remember reading years ago of some modelling based on just this scenario which predicted HIV could be wiped out within a few generations using just existing medications. this was based on all world governments joining in and requiring treatment. If anyone has a link please send it through.
I do not support the idea of mandatory treatment at this time . If a person chooses not to seek treatment for HIV I support that decision . Treating HIV requires a lifetime of dedication , with the current treatments and the cost to maintain them I could see a person choosing not to persue that route . I would hope people come around and value life enough that they choose to to medicate and make the most out of it but my idea of support is not to force anyone into doing what they don't want to do .
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Forcing treatment may not be called for but how about adjusting the US treatment guidelines to recommend it? That way its an option that people and their doctors can choose? Instead of how it is now waiting to hit a certain cd4 number.
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Forcing treatment may not be called for but how about adjusting the US treatment guidelines to recommend it? That way its an option that people and their doctors can choose? Instead of how it is now waiting to hit a certain cd4 number.
Suggestions are always welcome ;) . My concerns are more about access to affordable care .
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Suggestions are always welcome ;) . My concerns are more about access to affordable care .
I agree 10000%. But I don't think we should not chabge treatment recommendations if its determined that they would benefit the patient and community because our medical insurance system has issues. We should be working and advocating change on both fronts.
I hope as more meds move to generic treatment funding programs will be able to treat more people. No one, even those newly diagnosed, should have to wait for treatment.
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I agree 10000%. But I don't think we should not chabge treatment recommendations if its determined that they would benefit the patient and community because our medical insurance system has issues. We should be working and advocating change on both fronts.
I hope as more meds move to generic treatment funding programs will be able to treat more people. No one, even those newly diagnosed, should have to wait for treatment.
There has been allot of press lately about the advantages of starting treatment early as well as UAB and its program to do routine screenings for HIV . If the scientific and medical community wants to lobby congress for affordable treatment options for those that choose to be tested and treated I would be very happy to see it ... but I'm not that optimistic about the state of health care in America , its a slow path to progress .
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It is slow. I just hope as more treatments become affordable with generics more people could be covered with government programs. Hopefull obamacare will expand services as well. Im not holding my breath but I can hope for change.
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the same news that it's been for years.
Unless you test enough to find out early, about 1/3 of all HIV/AIDS cases aren't diagnosed until years after being infected, when a person finally starts having health problems and seeks medical care. That means that nearly 1/3 of us find out we're positive because we're so sick already that we ended up in the hospital or seeking medical care, with AIDS, starting meds immediately, and hoping not to die.
I know for me, being in the 33% group, this means I have never really understood the worrying the other 2/3 have about taking meds. When viewed as the life-savers that they are, one really doesn't care too much about side-effects - except the side effect of keeping you alive. ;) :D
I'm with leatherman on this. Well said. :)
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I definitely agree that it is important for those who are sexually active to be aware of their status, but it has to be voluntary, consensual testing - not mandatory, forced testing. As discussed in another thread, it is important that access to treatment is provided.
A recent newsfeed story that is still posted on poz.com discusses Medicaid expanding coverage in some states for expanded HIV/AIDS programs. The letter that is attached to the article states:
"Of those living with HIV, it is estimated that less than 17 percent have private health insurance and nearly 30 percent do not have any medical coverage" (Source: http://www.aids.gov/federal-resources/policies/health-care-reform)
It is imperative that if we want to encourage people to get tested and know their status, that we make sure that they also have access to treatment. Unfortunately, for many people, this is not the case.
First, and foremost, as Ann always says, responsible adults know that it is of utmost importance that they use condoms - particularly if they do not know the status of their partner. Testing and knowing ones status is not going to stop HIV from spreading. Testing, knowing ones status, and receiving treatment also is not going to stop HIV from spreading (although both can have a positive impact) ---- practicing safe sex is the surest way of stopping or severely slowing the spread of the disease ----- "it really is that simple." (Right Ann? ;D)
Excellent post!
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I know for me, being in the 33% group, this means I have never really understood the worrying the other 2/3 have about taking meds. When viewed as the life-savers that they are, one really doesn't care too much about side-effects - except the side effect of keeping you alive. ;) :D
But you were living surrounded by AIDS. Why didn't you test yourself regularly, if not because you might have been afraid of HIV and the piss poor treatments at the time. I think I was tested 1-2 times a year, every year from 1986 or so. If you were in routine consistent health care in NYC, the doctors offerred and even encouraged regular testing.
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Why didn't you test yourself regularly, if not because you might have been afraid of HIV and the piss poor treatments at the time. I think I was tested 1-2 times a year, every year from 1986 or so.
wow. you started early. The first Elisa test was in 85 and the western blot didn't come out until 87. The first med AZT wasn't in use until 87 with ddI not entering the market until 89.
Also there was a huge difference in knowledge, treatment, and testing between living in some place like San Fran or NYC and elsewhere. Living in Charlotte NC and Cleveland OH, we were hundreds of miles from the epicenters of HIV and no one even had a clue that the disease had already spread it's tentacles so far out into the country. In 1984 when I was infected in Charlotte, GRID was something happening miles and miles away and the nightly news (the only pre-internet information source) told me it had to do with poppers and bath houses. By the time I began to see an ID doctor in Ohio (Mar 1993) I and my partner were among the first dozen (patient #6 and #7) people even diagnosed with HIV/AIDS in our county. Randy was #22 of AIDS-related deaths recorded when he passed away in 5/94.
I didn't test earlier than Dec 1992 because testing in the mid 80s and early 90s, when it hardly had a name much less when there were no medications for it, and getting a positive result was just a guaranteed death sentence. Knowing for sure that you'd be dead within 18 months or so was a pretty big bummer. As it seemed to be spreading like wildfire, it was just much easier on the psyche to keep living until you began wasting away. Most of my friends who got sick and died in those days hadn't bothered testing either. As I'm the only one left alive from dozens and dozens of my friends in Ohio back in those days, you'll just have to take my word for it that taking a test and knowing you were going to die just wasn't worth the emotional toll.
By the time my partner got sick, which prompted me to get tested, there was only AZT and it was dubious as to how much help that was. Though it made me incredibly sick and I eventually quit taking it, I do have to credit the 9 months that it attempted to thwart my HIV as possibly the reason I'm here today. So technically, I didn't see any reason or bother getting tested until there were meds actually beginning to slow down the epidemic.
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Hmm. Yeah regional differences.
Any way it sounds like the gay 1890s or the Weimar Republic, so long ago now.
But at least in the late 80s' I knew many guys who had been tested and were HIV+ and weren't dying in months.
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But at least in the late 80s' I knew many guys who had been tested and were HIV+ and weren't dying in months.
the vast majority of my friends in NC and OH died between 87-95. Usually one of us would be sick, get tested and diagnosed, and then from 6-18 months we watched them waste away or be hospitalized numerous times until they passed away. Sad times. :'(
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"Of those living with HIV, it is estimated that less than 17 percent have private health insurance and nearly 30 percent do not have any medical coverage" (Source: http://www.aids.gov/federal-resources/policies/health-care-reform)"
In the US, constraining HIV could be made much easier, but not on a State by State basis. It should be Federal, as the States will never uniformly comply. It could be as simple as legislating that anyone with HIV automatically gets Medicaid, and can therefore access appropriate therapy. Testing aside, as long as healthcare is unavailable, HIV will never be stopped. As the recent studies show, taking HIV meds lowers transmission by about 96%.....so if the US was serious about stopping HIV, we have the means already.
Getting people tested so they actually start therapy is another riddle.
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"Of those living with HIV, it is estimated that less than 17 percent have private health insurance and nearly 30 percent do not have any medical coverage" (Source: http://www.aids.gov/federal-resources/policies/health-care-reform)"
In the US, constraining HIV could be made much easier, but not on a State by State basis. It should be Federal, as the States will never uniformly comply. It could be as simple as legislating that anyone with HIV automatically gets Medicaid, and can therefore access appropriate therapy. Testing aside, as long as healthcare is unavailable, HIV will never be stopped. As the recent studies show, taking HIV meds lowers transmission by about 96%.....so if the US was serious about stopping HIV, we have the means already.
Getting people tested so they actually start therapy is another riddle.
What do you do with the people who don't want to test or start treatment ?
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Well surely in the USA people who dont feel secure financially, are working their butts off just to survive, and don't have affordable health care, wouldn't want to test and get a scarey diagnosis.
Its a tricky public information campaign to run in the USA. There is still no sense that health care is a right of all. Its not going to fly - hey get tested and if you are HIV+ and need HAART - the government has programs to help you. Really doubt a lot of powerful people in state and national goverment want to stand by that message.
And now 2010, 2011, that ADAP and Medicare safety net is faltering. What a mess.
This contributes to the stigma of HIV, as not only an STD, but furthermore an avoidable STD thus the guilt and stupidity and immorality of it all, but to boot, a very expensive disease we all know quite a few members of the public resent the government having to pay to treat.
Yet 2 billion a week, (every two weeks?) in Afghanistan, well that's ok.
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What do you do with the people who don't want to test or start treatment ?
Well, you wait until they wind up in the hospital and then the costs of treatment and hospitalization go through the roof!
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What do you do with the people who don't want to test or start treatment ?
for the "don't want to test", I'd test test test anywhere, anyhow. It's the stigma of HIV that prevents getting tested, so fuck that, just test, test, test. At the doctors. At the airports (they already grab our nuts anyway). At public events. At movie theaters. I don't care where. Test everyone.
Once they KNOW their status, they can get treatment (especially if HIV+ = Medicare enrollment), or not at their choice, but at least they'll know they're HIV+. And as we've said in other threads, there's general agreement that "those that know their status" generally DO NOT knowingly pass it on. It's those that DON'T KNOW that spread it around.
This is the only way, absent a cure (yeah, right) that we will STOP hiv in it's tracks. It's been done with TB, and various other viruses throughout history (mandatory vaccinations aren't much different that mandatory testing). No vaccination, no school. That's already in place. No test, no....we'll have to figure that one out.
Sounds extreme, but if you look at what and how we've approached this dillema with other diseases, it really isn't an extreme approach. It's the stigma that's doing this for HIV, and allowing it to propagate so freely.
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for the "don't want to test", I'd test test test anywhere, anyhow. It's the stigma of HIV that prevents getting tested, so fuck that, just test, test, test. At the doctors. At the airports (they already grab our nuts anyway). At public events. At movie theaters. I don't care where. Test everyone.
Once they KNOW their status, they can get treatment (especially if HIV+ = Medicare enrollment), or not at their choice, but at least they'll know they're HIV+. And as we've said in other threads, there's general agreement that "those that know their status" generally DO NOT knowingly pass it on. It's those that DON'T KNOW that spread it around.
This is the only way, absent a cure (yeah, right) that we will STOP hiv in it's tracks. It's been done with TB, and various other viruses throughout history (mandatory vaccinations aren't much different that mandatory testing). No vaccination, no school. That's already in place. No test, no....we'll have to figure that one out.
Sounds extreme, but if you look at what and how we've approached this dillema with other diseases, it really isn't an extreme approach. It's the stigma that's doing this for HIV, and allowing it to propagate so freely.
I'm thinking your wild west Aids round up plan is stigmatising . Condoms still seem the best low tech . answer to help control the HIV virus at this time to me . I really cant believe you are suggesting rounding up people with HIV and forcing them to test and treat .
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I'm not suggesting a roundup of HIV+ people. I'm suggesting a plan to test EVERYONE. Then offer information and treatment. Where and how we test is up for grabs, but it needs to be thorough (even in old folks homes since they're spreading it too). That's all.
If we can vaccinate every child and make it a requirement before they get into school, we can certainly figure out how to test everyone for HIV (a good publicity campaign wouldn't hurt).
I know it sounds radical. But I don't think it is. Just my opinion.
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It should be Federal, as the States will never uniformly comply. It could be as simple as legislating that anyone with HIV automatically gets Medicaid, and can therefore access appropriate therapy.
work has already been done over the last year to do exactly that.
"State Medicaid 1115 Waiver Option to Expand HIV Care and Treatment Access:
As part of its pledge under the National HIV/AIDS Strategy, the Centers for Medicare and Medicaid Services (CMS) recently released guidance and an application template to make it easier for states to apply for Section 1115 Medicaid waivers to cover pre-disabled people living with HIV. Right now (and until 2014 when health care reform expands Medicaid to most people up to 133% of the federal poverty level), most people living with HIV have to wait until they are disabled by AIDS to be eligible for MEdicaid. An 1115 waiver gives a state flexibility to immediately cover pre-disabled people living with HIV under its Medicaid program, and provides an important tool in addressing the current ADAP crisis."
http://www.taepusa.org/
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Cool! Didn't know this. But.....and there are buts....
I see blue states adopting it, red states not adopting it. Also, I still need to be <133% of the federal poverty level to qualify? That's how it read to me. Is that correct? If so, then that's a bummer.
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I'm not suggesting a roundup of HIV+ people. I'm suggesting a plan to test EVERYONE. Then offer information and treatment. Where and how we test is up for grabs, but it needs to be thorough (even in old folks homes since they're spreading it too). That's all.
If we can vaccinate every child and make it a requirement before they get into school, we can certainly figure out how to test everyone for HIV (a good publicity campaign wouldn't hurt).
I know it sounds radical. But I don't think it is. Just my opinion.
Couple of problems with this:
1) So, let's say hypothetically that everyone gets tested and they all get tested on January 1st - but then they engage in risky behavior or they had risky behavior a few days before they tested --- the test would not show the infection or they could become infected shortly after having the test. So, how often does someone get tested? Annually? Not gonna be enough. Quarterly - not gonna be enough. Maybe it would have to be weekly or even daily. When the simple answer is to practice safe sex.
2) The reason for mandatory TB testing, in some cases, and mandatory immunizations to go to school is to prevent the spread of diseases that are transmitted via airborne and non-intimate contact means. For the most part, HIV is spread via sexual contact - unprotected sexual contact. With universal precautions in place, transmission in the medical environment is very low (and in the case of a needle stick - today's response would be to start PEP - and I believe that is done whether the person is known to be HIV positive or not. Spreading of HIV via the blood supply is now rare (possibly even nill) due to screening protocols in place.
3) So, a person tests positive with this test everyone policy - how do we ensure they are compliant with treatment? Follow them around for life? If they are not compliant, what is done to them? Imprisonment? Man, talk about stigmatization of a disease, if that starts happening.
In a perfect world, person's who are sexually active and have other risk behaviors or believe they may have otherwise been exposed to the virus would get tested. I am a definite advocate of testing AND TREATING - but mandatory testing of everyone is letting emotion override intellect and is only a few small steps away from calls to set up quarantine camps for life for those who are positive .
Push the envelope a little bit further and we could evolve into a society that develops a test for criminal behavior and once identified immediately locks people up before they have a chance to commit a crime - unless we figure it out while they are still in the womb - and then we could just preempt the birth....
I don't see how mandatory testing is going to have any effect on diminishing the stigma associated with HIV/AIDS. It might actually have the reverse effect and increase the stigma. Instead of using resources to test everyone - let's encourage testing, but put more resources into finding a cure and continuing to get the message out that HIV/AIDS is, for the most part, a preventable disease. --- Just my opinion --- even though it isn't that radical. :)
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I see blue states adopting it, red states not adopting it.
Exactly! now the push is on to get states to apply and use the 1115 waiver.
I still need to be <133% of the federal poverty level to qualify?
no. "obamacare" is going to require states to provide medicaid to people up to 133% FPL. The 1115 waiver would allow a state the choice to give people making >133%FPL this parital medicaid to cover meds. In effect, an 1115 waiver could wipe out state ADAP and give all pozzies access to HIV meds; however, I'm sure they'll be putting some financial limits onto it.
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For what it's worth, I'm also for putting as much money as possible towards a cure. That's the REAL answer.
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Exactly! now the push is on to get states to apply and use the 1115 waiver.
no. "obamacare" is going to require states to provide medicaid to people up to 133% FPL. The 1115 waiver would allow a state the choice to give people making >133%FPL this parital medicaid to cover meds. In effect, an 1115 waiver could wipe out state ADAP and give all pozzies access to HIV meds; however, I'm sure they'll be putting some financial limits onto it.
This is, actually, pretty exciting if it can get going. Unfortunately, it sounds like it won't help people like me; I'm on the State high-risk insurance pool, which costs me about $12k annually. But it's all I can get (I'm too far above to FPL to qualify for anything). If the repubs don't kill healthcare reform, 2014 will be a blockbuster year!
Added: I just read the statement from the link you posted. I didn't see anything that referenced anything >133 of the FLP -- only found <133 or 100 or less. It seems one has to have no income, or still be destitute to qualify for this waiver? Ugh.
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Couple of problems with this:
1) So, let's say hypothetically that everyone gets tested and they all get tested on January 1st - but then they engage in risky behavior or they had risky behavior a few days before they tested --- the test would not show the infection or they could become infected shortly after having the test. So, how often does someone get tested? Annually? Not gonna be enough. Quarterly - not gonna be enough. Maybe it would have to be weekly or even daily. When the simple answer is to practice safe sex.
Well, I'm not in favor of mandatory testing.
But this argument doesn't really hold up.
First, if there are 56,000 new infections per year, then the number of people in the window period would be quite small compared to the 230,000 or so undiagnosed -- well under 10,000 (since most people would show at 6 weeks), and at that level of undiagnosed, the potential level of additional new infections from the undiagnosed would drop dramatically -- especially if this hypothetical universal testing were accompanied by an education campaign and an annual repeat. If the other 220,000 start to protect their partners better and/or some large fraction get onto treatment, one could see a very significant drop in new infections.
Second, how can one argue that practicing safe sex is the simple answer? I guess if simple answers aren't required to work? But if it were simple to get everyone to practice safer sex I wouldn't be here. And neither would you.
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I don't see how mandatory testing is going to have any effect on diminishing the stigma associated with HIV/AIDS. It might actually have the reverse effect and increase the stigma. Instead of using resources to test everyone - let's encourage testing, but put more resources into finding a cure and continuing to get the message out that HIV/AIDS is, for the most part, a preventable disease. --- Just my opinion --- even though it isn't that radical. :)
Mandatory testing won't have any effect on diminishing the Stigma Phil, but if we can get rid of the Stigma, reduce the cost of meds and have enough experts on stand by to counsel everyone who come up with positive diagnosis then maybe, just maybe Mantatory testing would work.
I agree with you Phil keep the research going and get more Education out here and keep the message alive.
Aroha
Jan :-*
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I'm not suggesting a roundup of HIV+ people. I'm suggesting a plan to test EVERYONE. Then offer information and treatment. Where and how we test is up for grabs, but it needs to be thorough (even in old folks homes since they're spreading it too). That's all.
If we can vaccinate every child and make it a requirement before they get into school, we can certainly figure out how to test everyone for HIV (a good publicity campaign wouldn't hurt).
I know it sounds radical. But I don't think it is. Just my opinion.
Rather than trot out the usual rebuttal(s) to this perennial proposal, I will instead say only "beware the Law of Unintended Consequences."
MtD
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I will instead say only "beware the Law of Unintended Consequences."
MtD
Agree, mandatory testing (as compared to voluntary testing with consent) is hopping on to a very slippery slope, in my opinion.
Stage 2:- MandatoryTattooing of every poz person with a scorpion sign on their genitals ?
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Agree, mandatory testing (as compared to voluntary testing with consent) is hopping on to a very slippery slope, in my opinion.
Stage 2:- MandatoryTattooing of every poz person with a scorpion sign on their genitals ?
Ouch that hurts just thinking about it... ;)
Aroha
Jan
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Once they KNOW their status, they can get treatment (especially if HIV+ = Medicare enrollment),
HIV does not equal Medicare. In order to get Medicare, for one-a person has to have worked long enough and paid into it enough to get it. People who haven't worked don't get Medicare. Two, a person has to meet Social Security's disability definitions. People don't get disability anymore just because they're HIV+. And where I work, I see a lot of people (and they're HIV+, I work in an ASO), who get turned down from disability, and in some instances it surprises me. I believe some of the people I see really deserve disability. It's getting harder and harder to secure this.
In the meantime, a lot of people get turned down from Medicaid also (in Indiana, it's not being poor that qualifies when one's an adult, you have to meet Medicaid's requirements for disability which can be more stringent than Social Security's), and have to wait until the state's high risk insurance kicks in. And they have very strict requirements. We have to prove residency and income, and for some people who are either undocumented or don't have the proper ID, it can be a clusterfuck.
So some people end up on patient assistant programs, and they're pesky also. They're always calling, wanting to know why these people aren't on ADAP, and most times requiring that they apply. The requirements for getting ADAP are the same as getting the state's high risk insurance, which I've mentioned The drug companies usually don't like to send free meds for more than a year, unless it's unusual circumstances. It's not as simple as test and treat, with some persons.
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There are other illnesses that require mandatory testing, why not hiv? When I got married in NYC in 1984, I had to be tested for syphilis in order to obtain a marriage licence. I've had several jobs over the years where TB testing was mandatory. Why not hiv? We get too precious over hiv.
~waits for the shit to hit the fan~
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There are other illnesses that require mandatory testing, why not hiv? When I got married in NYC in 1984, I had to be tested for syphilis in order to obtain a marriage licence. I've had several jobs over the years where TB testing was mandatory. Why not hiv? We get too precious over hiv.
~waits for the shit to hit the fan~
I have turned off all fans in my house and have taken out the cleaning supplies :o
I think there are always going to be instances where mandatory testing is appropriate - example: drug testing for pilots; various testing for those who work in healthcare environment; eye tests for those who are going to drive; syphillis test for those getting a marriage license, etc.
My only issues in regards to HIV testing is that, like it or not, there is a stigma attached to the disease, and mandatory testing is not going to get rid of that stigma. Also, the lack of treatment access for those who test positive - including access to mental health services. As we see so often in the Am I Infected area, many people have a great deal of anxiety regarding acquiring HIV.
If large scale testing is going to be done, we have to make sure the system can handle the increased demand for treatment (all aspects of it).
Mandatory testing is an area that has to be treaded into very carefullly because of the potentially dangerous consequences it could have in regards to people not being able to access services and increasing stigma.
I think a well planned and thought out campaign to encourage routine, voluntary testing is needed. Access to expanded testing and treatment is needed. And, dedication of resources to get to a cure are in order.
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how many of you were infected by someone else?
My guess would be everyone.
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There are other illnesses that require mandatory testing, why not hiv? When I got married in NYC in 1984, I had to be tested for syphilis in order to obtain a marriage licence. I've had several jobs over the years where TB testing was mandatory. Why not hiv?
Because HIV is not transmitted through casual contact I don't think widespread mandatory testing is warranted. Certain employers need to do mandatory testing for TB due to the nature of the work and the nature of that illness. HIV is not the same. That said, due to the progressive nature of the disease it is important for people to find out if they are HIV+ as soon as possible. Therefore I do think that there should be "opt out" testing for anyone who goes to the ER, urgent care, health department or doctor's office (if labs are drawn). Counseling is available through all those locations and confidentiality laws are already in place. Everyone on this forum agrees that people need access to healthcare and treatment but we shouldn't let access to treatment decide who gets tested. It is not fair to the uninsured to only test people who have insurance and not provide routine testing for those who don't. It also doesn't work to say we are not going to test anyone unless everyone has access to treatment.
We get too precious over hiv.
I agree. Obviously some people feel because of stigma that HIV needs to be in it's own special category, with it's own special policies and it's own special laws. Making HIV exceptional, particularly legally, increases stigma. HIV needs to be treated as the virus it is.
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There are other illnesses that require mandatory testing, why not hiv? When I got married in NYC in 1984, I had to be tested for syphilis in order to obtain a marriage licence. I've had several jobs over the years where TB testing was mandatory. Why not hiv? We get too precious over hiv.
~waits for the shit to hit the fan~
I don't know that I necessarily have a problem with mandatory testing. The alternative, as has been suggested, is the spreading of the virus and the huge costs associated with hospital treatment when the disease fully manifests.
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Everyone on this forum agrees that people need access to healthcare and treatment but we shouldn't let access to treatment decide who gets tested. It is not fair to the uninsured to only test people who have insurance and not provide routine testing for those who don't. It also doesn't work to say we are not going to test anyone unless everyone has access to treatment.
Beautifully expressed.
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I like Ann's word "Precious." Quite accurate.
What I'm suggesting IS mandatory testing. But going with that has to be requisite changes in law, i.e., make Medicare available to anyone testing positive (whether they're eligible under today's rules or not) so they can get treatment IF THEY WANT. Even if they don't want it, they'll be aware they're HIV+, and less likely to unknowingly infect others. THAT would slow down HIV transmission to a crawl, at least in the US. Maybe it will stop it and end the epidemic that's killed all my friends.
As for the stigma, I seriously doubt it will ever go away. So fuck it. Test test test and stigma be damned. There will be stigma without testing, there will be stigma with it. So just get it overwith already and get rid of HIV the best way possible. It's just a virus. Nothing more. Just like Ann said.
By the way Ann, I'm definitely a fan of yours. Love your posts.
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I prefer people to test who want and see value in testing rather than getting forced. Access to decent care seems key here otherwise there's bugger all point in knowing.
Medical treatment is generally premised on informed consent so don't see why it is different for HIV which is not contagious. This for me is an over-riding principle. If you are going down the forced care route then why not ban burgers, barbeques and alcohol, make people exercise, stop intensive farming, ban international air travel and many, many other things that cause ill health and spread disease more serious that HIV?
Condoms are difficult, people don't like them. I think overall we have done rather well with them.
- matt
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I never consented to being tested but it saved my life. I'm quite glad it happened. No one else has been in my situation on these forums I guess?
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I never consented to being tested but it saved my life. I'm quite glad it happened. No one else has been in my situation on these forums I guess?
Hellraiser, I did consent (in the Emergency Department) at the hospital and YES, it saved my life. I am not making excuses when I say that I did not get tested for years because I was afraid of the potential results. I know now that this defies logic but at the time it seemed logical that mentally, I feared that I would 'lose it' with a POZ diagnoses. That fear was based on a ton of erroneous information about testing, the stigma and the survivability of this disease. I am still seeing my same fears from those recently diagnosed.
Mandatory routine testing with the promise of effective treatment seems like a more prudent route to really get a grip on this virus.
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I prefer people to test who want and see value in testing rather than getting forced. Access to decent care seems key here otherwise there's bugger all point in knowing.
Medical treatment is generally premised on informed consent so don't see why it is different for HIV which is not contagious. This for me is an over-riding principle. If you are going down the forced care route then why not ban burgers, barbeques and alcohol, make people exercise, stop intensive farming, ban international air travel and many, many other things that cause ill health and spread disease more serious that HIV?
Condoms are difficult, people don't like them. I think overall we have done rather well with them.
- matt
This whole discussion re mandatory testing is all just mental masturbation anyway. It will NEVER happen. But it IS fun to discuss. In the US, it would take a President willing to push this and hence destroy his political career. That just won't happen. There isn't that much political capital in the entire WORLD to have this happen. But it's fun to postulate over drinks.
I suppose it COULD happen in a dictatorship or similar since control is so absolute. But even then, the cost would probably stop it (let's see -- China with 1.3B people, $10 per test, $10.3B just to do this?!) It won't happen.
But again, fun to argue about.
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10.3Billion would just be the ante. To actually treat all the resulting positive results would be the issue. Honestly though 10billion dollars isn't a lot in terms of US economy seeing as we just finance everything anyway.
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You can't "round up people with HIV to test them" since there is no way to identify who doesnt know.
The logic in this thread is going down the toilet as well as respect for individual liberty.
HIV is not transmitted through air, coughing, touching, toilet seats or doorknobs. In how many recent threads have we had to discuss treatment as prevention and still people aren't thinking it through, just gut reaction comments and "great ideas".
William F Buckley had the great round up idea in the 80's. Tatoo HIV+ on HIV+ people. Well, that solves the problem of people who know.
Bring on all your illegal and offensive ideas about how to deprive the liberty of the ones who don't. I will be happy to send them to the National Review in memory of William F.
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There is a difference to Mandatory testing and Routine testing. People often have a battery of blood tests performed during physicals and other medical exams. Having HIV testing be one of those tests makes it ROUTINE -- it's not mandatory because you don't have to go have you blood work done. No one is going to track you down and impose some "penalty" on you.
Personally, I think HIV testing should become ROUTINE -- but not mandatory.
Hey Ann -- I know it's a bit of a stretch, but the examples of other mandatory tests that you give aren't truly mandatory -- they all are part of something you are choosing to do, e.g. get married, hold a particular job. So those tests are tied to something else -- I think this discussion on mandatory HIV testing is simply that -- get an HIV test or else. So we would be holding HIV to a different standard here. Hence, why I think routine vs. mandatory is the best choice.
Mike
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Hmm. Yeah regional differences.
No, not really -- my roommate in Richmond, VA attempted to get me to go get tested when the test was first available in 1987. This wasn't something just being done in NYC or San Francisco contrary to what someone else just stated. He went and got the test, I didn't -- my excuse is that I was just a big ole sissy, nothing else.
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. Even if they don't want it, they'll be aware they're HIV+, and less likely to unknowingly infect others. THAT would slow down HIV transmission to a crawl, at least in the US. Maybe it will stop it and end the epidemic that's killed all my friends.
Richie in a perfect world this would be wonderful...but sadly this is not a perfect world.
Aroha
Jan
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Anniebc --
You're preaching to the choir. I'm just suggesting radical change, not perfection. I agree that doesn't exist as far as I can see!
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I think I was tested 1-2 times a year, every year from 1986 or so.
And yet you still managed to get infected.
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And yet you still managed to get infected.
Which is an interesting comment because it relates to this discussion how??
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Which is an interesting comment because it relates to this discussion how??
Gee, I wonder? Why bother to test if you don't practice safe sex.
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Hmm... well, I never actually said I was for mandatory testing - I'm not. I just threw some questions out there. Naughty of me, I know. ;)
I AM for routine, opt-out testing. It's bound to slow the rate of onward transmissions. For example, in countries where routine, opt-out testing is in place for pregnant women, the rate of mother-to-child infections is practically non-existent. Opt-out testing is working - and working well - in pregnancy, so why shouldn't it work equally as well in the general population?
I really don't get the "we can't test because of access to treatment issues" argument. Not knowing their status is not going to make anyone any less hiv positive, but it's been shown again and again that people who know their hiv status are much less likely to pass their virus on, treatment or no treatment.
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This whole discussion re mandatory testing is all just mental masturbation anyway. It will NEVER happen. But it IS fun to discuss. In the US, it would take a President willing to push this and hence destroy his political career. That just won't happen. There isn't that much political capital in the entire WORLD to have this happen. But it's fun to postulate over drinks.
But again, fun to argue about.
Stupid question: Why waste the time and energy aruing and postulating overthings that will never happen? Wouldn't the energy you put into this form of mental masturbation be better used by trying to come up with realistic and workable solutions? Otherwise, what's the point in wasting time over all of this?
CaptCarl
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I AM for routine, opt-out testing.
sadly, here in America with the extra stigma that we've added to HIV by acting like it's something special/scary, testing is not routine and is opt-in -- and that's IF the doctor thinks to ask you to opt-in.
I know over a dozen people who went months to years before a doctor finally explained that no HIV test had been given and suggested it to the patient - and for all those people HIV was the underlying problem. I have to wonder how their lives might have been better if treated sooner because the HIV test was routine and opt-out from the very beginning.
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Stupid question: Why waste the time and energy aruing and postulating overthings that will never happen? Wouldn't the energy you put into this form of mental masturbation be better used by trying to come up with realistic and workable solutions? Otherwise, what's the point in wasting time over all of this?
CaptCarl
Welcome to the internet
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sadly, here in America with the extra stigma that we've added to HIV by acting like it's something special/scary, testing is not routine and is opt-in -- and that's IF the doctor thinks to ask you to opt-in.
I know over a dozen people who went months to years before a doctor finally explained that no HIV test had been given and suggested it to the patient - and for all those people HIV was the underlying problem. I have to wonder how their lives might have been better if treated sooner because the HIV test was routine and opt-out from the very beginning.
What you wonder is irrelevant. I'm surprised that you would stand up in this place preaching about testing given what happened to your previous partners.
You should dwell on that. We all know what you are. >:(
More generally, people have a choice about what medical tests they are subjected to. To the confuzzled newly diagnose person I say, don't let left wing do gooders talk you out of your freedom.
I see no reason to abandon that freedom. It may not suit some tightasses around here, but then freedom never does.
MtD
(Who says FREEDOM FREEDOM FREEDOM!)
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What you wonder is irrelevant. .... We all know what you are. >:(
My thoughts, opinions, and questions are just as relevant as yours. You are no more than just another person on the planet, and I am entitled to my opinions just as you are. I don't tell you that your comments are irrelevant and only ask that in return. Numerous times we have shown that we do not like one another and yet you persist in attacking me or my posts while I leave you in peace. Your typical veiled slander of me is rude and unwarranted.
I'm surprised that you would stand up in this place preaching about testing given what happened to your previous partners.
but that is exactly why I think testing should be recommended more and easier to opt into. My story with Jim is a prime example of why testing is so important. As I have explained innumberable times (and received grief for it from a group of people here) because Jim went untested for so long he's now dead. You can't have a better example of why testing should be done than that - unless it's the person who finally got tested today after presenting to the hospital and is going to live because the doctors will treat them properly.
For the life of me, I just don't understand why you and some others think that my dead partner is not a great example of why testing is neccesary. Telling this story to the public has encouraged people to finally get tested, and several people have found that they were positive and got treatment in time that they aren't dead like my partner. For me, that's proof that although you and others have an issue with me for telling my story of me, Randy and Jim, our story has saved lives by getting people tested and treated in time.
As I have clearly stated before, not only does the fault lie with us for not getting Jim tested; but it also lies with every medical professional that dealt with us for not suggesting routine opt-in testing. When Jim got sick and they began to run tests, they discovered an odd white blood cell count that led to the cancer discovery; but still no one tested him for HIV.
It wasn't until he was in the hospital for a week, that I asked and found that no HIV had been run yet. ::) I mean, reallly. Someone presents with an unexplained illness with an HIV positive partner and no medical professional even suggests an HIV test?!?!? Many people believe that HIV is a test run in the battery of blood tests that may be given and that just isn't the case at all, as it isn't even suggested in cases that would warrant it.
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words
Mikey,
It's not that you have dead boyfriends what makes decent folk detest you, it's how you wave their bones around as if the rest of us owe you some sort of respect because they died.
We don't. You've not cornered the market on human suffering.
JIm and Randy are dead. You need to let those fuckers rest in peace.
Frankly the way you bang on about your dead husbands is disturbing -- bordering on the creepy. It's like you're a shiver looking for a spine to run up.
Ick. You really are horrible. :(
And that's a shame. Your politics are, for the most part, good. Very good. In a different world I could work with you.
But not in this world.
MtD
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Many people believe that HIV is a test run in the battery of blood tests that may be given and that just isn't the case at all, as it isn't even suggested in cases that would warrant it.
I find this little nugget hard to believe. I have never met a person who assumed an HIV test is part of any battery of routine lab tests. In fact, most people don't even give any thought at all to what their doctor's are ordering for routine testing -- I can't tell you how many times that I would be about to draw someone's blood and they would ask me, "So, what tests are being done today?" Back in the time that I did this -- I was not allowed to tell them -- I just referred them back to their doctor. No one -- I mean NO ONE -- ever said, then let's not do this now, I want to know what is being drawn. I would bet (pure conjecture here) that very few of them ever did call the doc and ask.
Mike
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I find this little nugget hard to believe. I have never met a person who assumed an HIV test is part of any battery of routine lab tests.
Mike
I was thinking the same . I would think a HIV test would not be a routine test actually .
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We do see people in Am I Infected who seem to think that hiv would be flagged in ordinary blood testing - but they don't seem to think that hiv is specifically being tested for, only that the doctor would recognise a case of hiv infection going by their CBC and/or Chem Screen. I think that relates to how many people see doctors as all-seeing, all-knowing, more than anything else.
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We do see people in Am I Infected who seem to think that hiv would be flagged in ordinary blood testing - but they don't seem to think that hiv is specifically being tested for, only that the doctor would recognise a case of hiv infection going by their CBC and/or Chem Screen. I think that relates to how many people see doctors as all-seeing, all-knowing, more than anything else.
The Am I Infected forum, I would think, isn't the greatest barometer of the human condition seeing as how it's heavily weighted by people with un-treated obsessive compulsive disorders.
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it's how you wave their bones around...
Frankly the way you bang on about your dead husbands is disturbing
oddly enough, I was only talking about the need for more routine opt-in testing in this thread and it was YOU that brought up my deceased partners. It was your critique of me that compelled me to explain that having learned a very valuable lesson about the need for testing (ie my last late partner's death) I actually do have a premise on which to promote more testing to be easier to obtain. You are the one who quit discussing the issue about testing and made your post a personal attack at me. As always, I never initiate any correspondence between you and I; it was YOU who took this to the personal issue of me and my life and my late partners.
and quite frankly as one who has not had the distinct experience of losing not one but two long-term partners, I really don't care whether you approve of how much I speak of them or not. Losing them had more of a profound change (mentally, emotionally, and physically) on my life that coming to terms with being gay or my own HIV/AIDS diagnosis. Everyone here is entitled to their own experiences, which define them, the way they view life and what they bring to these discussions.
Losing Randy and Jim and retaining them as part of who I am is who leatherman/mikie is. Everything I think and do is filtered through those losses. As I've said before, I wake up every day in SC now for no other reason than the fact that they are both dead and I can no long live with them as I did for 25 yrs in Ohio. You may not like that I speak of my deceased partners; but I don't particularly like the fact that they're dead either.
I personally don't like your attitude toward cats, nor the "humor" you display in these forums; but I don't go around attacking you saying that your attitudes are irrelevant - I just accept you for the person you are. I would suggest that if you don't like the things I discuss that you simply ignore me. Or if you choose to comment on me and my life as you did, expect me to continue talking Randy and Jim ad nauseaum. ;)
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The Am I Infected forum, I would think, isn't the greatest barometer of the human condition seeing as how it's heavily weighted by people with un-treated obsessive compulsive disorders.
Eh, even people who didn't display the typical OCD red-flags have thought that a CBC could flag an hiv infection.
Most people know that CBCs include white blood cell counts, and many people are vaguely aware that hiv has something to do with a type of white blood cell, so it's not that far a reach. It's actually kinda logical, even though it's erroneous.
Remember, I'm not saying they think they're being tested for hiv, but that they think there will be tell-tale signs in normal blood work when hiv is present. It is a fairly common assumption, and not just with the OCD crowd.
Trust me sweetie, I've probably read every single thread ever written in that forum - going back to the very first FuseTalk days nine years ago.
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Trust me sweetie, I've probably read every single thread ever written in that forum - going back to the very first FuseTalk days nine years ago.
... which is why I pity you
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Remember, I'm not saying they think they're being tested for hiv, but that they think there will be tell-tale signs in normal blood work when hiv is present. It is a fairly common assumption, and not just with the OCD crowd.
exactly. many people of the vast un-HIV-educated believe that somehow an HIV test or diagnosis should come out of regular "blood work" - especially when they present with symptoms of an unknown cause. They believe they are being checked for many things. what things (STDs? cancers? flu?) they don't particularly know; but as HIV is found in blood the logic would seem that "blood work" would turn up HIV also.
I find this little nugget hard to believe. I have never met a person who assumed an HIV test is part of any battery of routine lab tests. In fact, most people don't even give any thought at all to what their doctor's are ordering for routine testing -- I can't tell you how many times that I would be about to draw someone's blood and they would ask me, "So, what tests are being done today?" Back in the time that I did this -- I was not allowed to tell them -- I just referred them back to their doctor. No one -- I mean NO ONE -- ever said, then let's not do this now, I want to know what is being drawn. I would bet (pure conjecture here) that very few of them ever did call the doc and ask.
if the people didn't know what the blood draw tests were, didn't call the doctor to ask for specifics, don't give any thoughts to the tests, and you weren't allowed to tell them, how can you just assume that they didn't think HIV was part of the battery of tests? It's just as logical to think that they did assume HIV was included in the mysterious set of tests. Their questioning obviously shows that the doctor did not explain well or the patient was too upset to understand properly. If the doctor has asked for an HIV test also, and gotten the extra consent, you would think the patient could remember at least that part of what they were being tested for. These scenarios actually show how uninformed people are when they give consent to the initial battery of tests.
Of course no one backed out. When you've asked the doctor to determine what illness you have and he orders a battery of tests you probably wouldn't back out of any of them because you wouldn't know which one would show up with the answer of you symptoms. That's why a battery of tests is ordered. How many un-HIV-educated people would know that the HIV test would require extra consent? Many probably do assume that the testing that has been ordered looks for all sorts of STDs, HIV, cancers, etc. since they've given consent to a "battery of tests" for multiple things that might be causing the symptoms for which they presented.
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I've never encountered a single person that believed what the two of you are claiming. Obviously I travel in different circles... or something. For this I am thankful.
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Mikey,
It's not that you have dead boyfriends what makes decent folk detest you, it's how you wave their bones around as if the rest of us owe you some sort of respect because they died.
We don't. You've not cornered the market on human suffering.
JIm and Randy are dead. You need to let those fuckers rest in peace.
Frankly the way you bang on about your dead husbands is disturbing -- bordering on the creepy. It's like you're a shiver looking for a spine to run up.
Ick. You really are horrible. :(
And that's a shame. Your politics are, for the most part, good. Very good. In a different world I could work with you.
But not in this world.
MtD
Just thought I should save this gem.
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expect me to continue talking Randy and Jim ad nauseaum. ;)
Seriously, you're telling the same group of people the same story over and over. Don't you believe people's eyes glaze over when reading the same thing over and over? Maybe it's best saved for your captive audiences in South Carolina.
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Gee, I wonder? Why bother to test if you don't practice safe sex.
The point of this thread is that people have a benefit from testing because they discover they are positive.
Half the people in this forum had many years of being HIV- until some fuck up.
So, some of the people in here have had this experience - many years consistently HIV negative. And because the testing is regular, they discover their seroconversion relatively rapidly. Which is one of the main advantages being argued in this thread.
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Seriously, you're telling the same group of people the same story over and over. Don't you believe people's eyes glaze over when reading the same thing over and over? Maybe it's best saved for your captive audiences in South Carolina.
Leatherman uses his personal experience to think about things happening today. Seems like all people do this and especially LTS - who reach into all those years of experience and pull out something that is not individual, but general, smart, and useful for others.
I never felt like Leather rattles old bones.
edited: I meant to say, reaches into individual experience - and reasons out something general to share with others.
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Leatherman uses his personal experience to think about things happening today. Seems like all people do this and especially LTS - who reach into all those years of experience and pull out something that is not individual, but general, smart, and useful for others.
I never felt like Leather rattles old bones.
Me neither, it's nice to read and learn from his experience.
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I've never encountered a single person that believed what the two of you are claiming. Obviously I travel in different circles
working with my ASO this past couple of yrs doing peer counseling with new intakes, speaking in public, counseling those being tested, and working the health fair exhibition booth, I have really been amazed at what people believe who have not been immersed in the HIV/AIDS world. Not only do many people believe a trip to the ER with blood work will garner an HIV test in the mix; but quite often (as we see here in the fears of some of our newer members) many people believe either that an HIV diagnosis equals a fairly immediate death sentence or the other extreme that there are meds making the HIV diagnosis of little consequence.
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Seems like all people do this and especially LTS - who reach into all those years of experience and pull out something that is not individual, but general, smart, and useful for others.
I'm a LTS also, but I don't rattle on and on about my dead first husband, or junkie ex-2nd husband, or my relationship with a woman. I rarely share anything about my life. And if I do, I don't talk about it over and over until I'm blue in the face.
I don't like continual showmanship, whether it's about relationships, or volunteer work. It shows an over-inflated sense of importance, and is not attractive at all. Nor are these stories totally unique. It's like a "look at how fabulous I am," and frankly, it gets tiring.
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Seriously, you're telling the same group of people the same story over and over.
sorry but sadly new members arrive every day who know nothing about either you nor me.
Don't you believe people's eyes glaze over when reading the same thing over and over? Maybe it's best saved for your captive audiences in South Carolina.
I will point out again that Matty brought up the topic of my partners not I.
Captive audience? Hardly. Today I worked for several hours at another summer festival, passing out HIV info, condoms, and testing information. I have three more events like that scheduled this month, along with a presentation at a monthly task force meeting, and a speech at an upcoming MSM HIV state conference. That's so far, as our prevention/education is always scheduling new events. I would imagine that just this month alone I'll speak with hundreds of South Carolinians who have never heard from me before.
I don't like continual showmanship, whether it's about relationships, or volunteer work. It shows an over-inflated sense of importance, and is not attractive at all. Nor are these stories totally unique. It's like a "look at how fabulous I am," and frankly, it gets tiring.
Actually that's just your misinterpretation of me and what I do. I never imagined that I would be close to turning 50 (as I figured the AIDS would off me before I reached 40), and yet here I am adding activist and advocate to my resume. If you want to interpret me discussing my goals and accomplishments after having AIDS for 20 yrs as some sort of over-inflated ego - perhaps its just jealousy on your part that you're not doing as much to help educate others and prevent the spread of HIV. Personally, I'm surprised you would diss me about such activities rather than encourage me to do as much as I possibly can.
All I see in your small-minded comments is another jaded member suggesting that some are allowed to speak about their personal experiences and others should not speak about theirs. perhaps as I counseled Matty, you should just skip my posts if my personal experiences that I choose to talk about bother you too much.
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I'm a LTS also, but I don't rattle on and on about my dead first husband, or junkie ex-2nd husband, or my relationship with a woman. I rarely share anything about my life. And if I do, I don't talk about it over and over until I'm blue in the face.
Thats your choice. If you were in a thread where the topic was being married to a junkie, you might want to actually share your own take on that.
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Peeps, I am going to step in for a moment here. This thread includes many thoughtful responses. But it also has slipped into unnecesarrily rancorous snaps. Cut it out!
Stay on topic and leave out the judgement about who talks about what and how they do it. It's not pertinent to the subject.
Otherwise I am going to be forced to hand out some Time Outs.
Thanks for your cooperation.
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sorry but sadly new members arrive every day who know nothing about either you nor me.
I, personally, prefer the sharing, give and take, back and forth in these forums. I took part ownership in this virus recently and learn something from those of you who have been here longer. I am continually fascinated by those here who want to shut the discussion down or restrict the content for one reason or another. Between all the snarky commentary on here, which there is no shortage of, all of us can learn something from each other.
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perhaps its just jealousy on your part that you're not doing as much to help educate others and prevent the spread of HIV.
To be fair BT65 has helped me many times but you will never hear her talking about it ... that's just the kind of person she is . I know personally that she helps people everyday but is not one to toot her horn about it .
I apologise ... I posted before I saw the warning .
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It's time for class lessons with Countess Luann!
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sorry but sadly new members arrive every day who know nothing about either you nor me.
New members do arrive here every day but hey come to seek our help and support they don't need to know the life stories of everyone here, all they need to know is they have our support...end of.
We all have stories to tell, but most of us don't feel the need to convince ourselves how wonderful we are by constantly talking about what we do, for example, I do more in a month than you do in a year but only a handful of people know about it...and they are the ones, the only ones that really matter.
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It's time for class lessons with Countess Luann!
I prefer Nene Leakes, more apropos.
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Locked.