POZ Community Forums
Main Forums => Living With HIV => Topic started by: blondbeauty on June 05, 2006, 03:19:02 pm
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This appeared three days ago in a Spanish Newspaper.
http://www.elmundo.es/suplementos/salud/2006/666/1149184806.html
Here is the translation:
OPINION "You no longer die of AIDS" BROWN SANTIAGO.
Writing about positive aspects of the epidemic in the early years or even a few years ago was hard and difficult.today, describing my personal feelings about the most significant changes in terms of the clinical aspects in the first twenty five years of the history of AIDS has become a much easier task worth sharing.
the spectacular improvements in treatment options,life expectancy and quality of life ( for the majority of infected people in our society ) (= spaniards) are now commonly known.But perhaps we don't stop to think about the immediate repercussions of this: the virtual normalisation of the lives of those affected:- a full social and family life,work, long term personal projects, all of this was not possible before but is now the norm.
to be able to share this information means that a new diagnosis is not now a traumatic experience . patients know of the changes and in spite of the problems that we still have to solve which can affect them negatively, they have a distinctly different attitude to their situation and future prospects.
As medical staff we now have a lot of experience, lessons learned and a lot of useful tools to use both now and in the future to come which enable us to say to the majority of our patients " you won't die of aids now" Brown Santiago is head of Infectious Diseases of the Hospital Ramon and Cajal of Madrid.
Edited to substitute automatic translation for Mikes translation, which is much better.
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VIH? ???
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Hiv in Spain is VIH: Virus de la Inmunodeficiencia Humana.
Aids is Sida in Spain: Sindrome de Inmunodeficiencia Adquirida.
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I was kidding, hence the smilie, but thanks for the clarification anyhow..
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:D :-*
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VIH? ???
It's the european equivalent to HIV :P
Hopes that clear things up for you HIVworker.
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.
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VIH? ???
It's the european equivalent to HIV :P
Hopes that clear things up for you HIVworker.
As I said earlier, it was a joke - which is why I used smilies. Normally it gets translated back to HIV when written in English.
Should I change my name to VIHworker?
R
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wow
Im wondering how this person can say that there is no longer a traumatic experience at being diagnosed
Yes maybe some people are able to take it and not feel traumatised, but Id imagine it is still the same feeling as it was back then?
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No you are understanding it correctly. The Dr. author of the article might think it is not traumatic. But I think it always is. I was told this way: "I think we´ve got Bingo!..."
This is the link to the Hospitals website. Another old building from the sixties belonging to the social security.
http://www.hrc.es/inicio.jsp
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Only if you are working in Spain, Hivworker :)
Totally agree with you, Water Duck. When I was told in October, it was pretty fing traumatic. I almost fainted. Literally!!!
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So getting VIH in Spain is no big deal? I wonder if this man has ever met a positive person. This article, unless really poorly translated is an insult to all positive people. Not a traumatic experience my ass. I'd bet a pol of the people here would find very few, if any, who thought that getting HIV was not traumatic.
Some people should heed the Chinese proverb: "It's better for the world to think you a fool, than for you to open your mouth and remove all doubt."
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Is this another disconnect between what a doctor thinks to be true and what actually is?
R
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I also almost fainted when I won my "Bingo"...
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No No R stick to HIVworker
R : HIVworker ---it has a special ring to it ;)
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Its not only traumatic for the person that is HIV+ but also very traumatic for the spouse who has tested negative. Give me 5 minutes with that dr and i will show him traumatic. Im new to all this but that really pisses me off.
>:( >:( >:(
Teresa
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They say it isnt traumatic because they are not the ones with the problem. Thats why the nurse told me "I think we´ve got bingo!". Maybe she wanted to make it sound not too important but I hate her since then.
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God yeah its horrific that people would be so blase about it
Makes me really angry to think about it
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Someone else posted something to this effect, that his doctor told him that there was never a better time to be infected with HIV (or VIH :-X).
Sounds weird, but true. The treatment options clearly make this a chronic, and not necessarily fatal, condition.
However, there will in fact be better time to be infected, the day the cure is found!
Hey worker, glad you're on this forum, guess your hand has been stamped now, huh? Excellent! J.
p.s. btw, have you been following the posts on the clinical trials forum regarding anti-tat? I have been corresponding with Dr. Erwann Loret, who was able to use his Tat Oyi vaccine to eliminate viral resevoir in the macaques...anyway I realized I'm close to highjacking this thread..so let me put down my AR-15....! Just check the thread out over there when you can.
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It would be like : QUICK go out get the bug this year, next year everyone is having it !!
How chic can one get :o :o :o
Siang
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I tell you what, Siang, once a cure is found there is going to be a major increase in other STD's...I think people will throw caution to the wind and go a bit haywire!
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being diagnosed with Aids is a big big deal. But maybe the doctor meant that by having Aids now compare to 15 - 20 years ago, it is less traumatizing because there were no meds to halt the disease whereas today, we at least have medication that can somewhat suppress the virus for a while. Either way it is traumatizing, but to a lesser degree if diagnosed today. At least that what I hope the doctor in Spain is trying to convey. Anyhow, I was pretty traumatized when I found out.
Justin
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Yes, I agree with you. That is what he is trying to say, but it is always traumatic. I am sure that when a cure is found another horrible disease will appear an we will all die of it...
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Well if he meant that HIV treatment is less traumatic today than in the past, he should have said that. You can't second-guess what he's saying. Yet the problem remains. Here is a medical expert for Spain, telling it's citizens that getting HIV is just not that traumatic. Forget the treatment angle, because this could be construed to mean that getting HIV is just no big deal.
Reminds me of those insensitive comments, especially from news anchors (who know next to nothing) that combating HIV just requires you take a few pills and "POOF" you are all better. I still hear those idiots today and one day I will mail them some of my "by products" from those few pills and see if they agree with their own stupid comments.
The bottom line is that when you speak from a position of authority, you have a responsibility to be absolutely sure of what you are saying and how you say it. Just look at what foot in mouth disease has done for George and unfortunately, just like this doctor, his comments can and will cause people to die. Not the kind of expert I want quoted on anything.
And to you Blondbeauty, if some nurse had made such a cavalier comment to me, about becoming positive, well she would be now slinging burgers at the corner Wendy's. I'd report her and the practice, in a heartbeat.
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I agree wholeheartedly with Theresa. Even if YOU are not the one diagnosed as positive, if the love of your life is told they are positive, well, this was one of the most traumatic revelations I've ever experienced in my life.
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this is my take on the text ( i lived in Madrid for 10 years ) trivia: elmundo is a right wing establishment newspaper
writing about positive aspects of the epidemic in the early years or even a few years ago was hard and difficult.today, describing my personal feelings about the most significant changes in terms of the clinical aspects in the first twenty five years of the history of AIDS has become a much easier task worth sharing.
the spectacular improvements in treatment options,life expectancy and quality of life ( for the majority of infected people in our society ) (= spaniards) are now commonly known.But perhaps we don't stop to think about the immediate repercussions of this: the virtual normalisation of the lives of those affected:- a full social and family life,work, long term personal projects, all of this was not possible before but is now the norm.
to be able to share this information means that a new diagnosis is not now a traumatic experience . patients know of the changes and in spite of the problems that we still have to solve which can affect them negatively, they have a distinctly different attitude to their situation and future prospects.
As medical staff we now have a lot of experience, lessons learned and a lot of useful tools to use both now and in the future to come which enable us to say to the majority of our patients " you won't die of aids now"
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Thank you mike for that excellent translation.
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I watch VH1 once-in-a-while. :o
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I don't understand his perspective at all.
There were 51,000+ AIDS-related deaths in 1995 in the USA.
That dropped to just under 16,000 AIDS-related deaths by 2004 (in the USA).
Yes, it's better than it was. But 16,000 deaths (in a wealthy country, where patients have access to pretty much all treatment options) is still a helluva lot.
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I understand what you are sayin Ademas...that is still a helluva lot. But, I hear over and over from medical professionals that HIV/AIDS is much better than it was before....and the most popular phrase of them all is that "HIV/AIDS is no longer a death sentence, but rather a cronic illness".....just because not as much people dying from this hideous disease (but still many) is considered a cronic illness? That seems very idiotic to me.
Justin
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More people die from the flu every year. And as the article says "most of the patients". Of course, many of them arrive to the hospital with OI from which they can´t recover or have resistance to all meds due to reinfection or bad use of the drugs in the past.
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If this author is hit by a bus today, I won't find it traumatic at all. I guess that makes us kind of even. :o
When part of that 51,000 or 16,000 is your friend, husband, or family member there is little comfort in the numbers...even if this prick in Spain is not traumatized by it.
Can you feel the love??
Chris
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to notify of a new diagnosis of infection by VIH does not constitute a traumatic experience.
*falls to the floor in side-splitting, tearful roars of uncontrolled laughter*
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You ask 10 people how HIV affected them and you are likely to get 10 completely different responses. It doesn't make any one of them more right than the others. It's all relative (and personal).
I think much of this may simply be due to the poor language translation. It's difficult to take this passage into the context that author intended, cause internet translation software is horrible.
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You ask 10 people how HIV affected them and you are likely to get 10 completely different responses. It doesn't make any one of them more right than the others.
True, but I also can't help but think it's unfortunate that we can't ask the 16,000 who died last year in the US, becuase I'm thinking we might have a resoundingly strong consensus in this particular demographic. ;)
I totally hear you about the internet translation thing--those programs really suck.
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Yes. I would agree that they would probably say otherwise. But then again, that 16,000 figure is a loaded number, (i.e., do we know the breakdown of the causes of those deaths?). The explanations for those deaths are probably varied (and some may be due to American specific issues...such as access to quality health care or refusal to get tested because of greater stigma associated with HIV, and these issues may or may not be necessarily applicable to Spain).
When I read the doctor's note, there were things that stuck out in my mind that suggested (to me) that he was fairly qualifying his commentary. For example the rough translation says...
To be able to transmit this information of honest way has done that, for example, to notify of a new diagnosis of infection by VIH does not constitute a traumatic experience.
The information he was referring to is the fact that many people are able to work and make long-term plans, (see the previous sentence). I agree that HAART has allowed people who are recently diagnosed, (another important clarification he made), the ability to remain gainfully employed and make long-term plans. We've had several people ask about whether or not they should continue to pay into their retirement plans and I have yet to see anyone say no. To me this is an illustration of just what this doctor is saying.
The translation then goes on to say...The patients are conscious of the changes and, in spite of the difficulties that still are pending to be solved and that to them can affect to them negatively, they contemplate with different attitude its situation.
The first part of that sentence (specifically, "in spite of the difficulties that still are pending") suggest that the doctor is well aware that there are complications to HIV treatment.
He also says...The doctors, by our part, we were now with many learned experiences, many lessons and many present and future tools to be able to say to him to most of our patients: "You no longer die of AIDS".
The "you no longer die of AIDS" bit is important, but so is the clarifying term "say to him to most of our patients," which seems to suggest that the doctor knows that this isn't applicable to everyone with HIV (and is aware that people still die and will continue to die of AIDS).
In the end, if I was a doctor (or a nurse), I would probably be saying the same thing (actually I do say the same thing as do many people when they speak to new people diagnosed with HIV). It's human nature to instill hope in others battling illnesses. If you test positive and someone is just coming at you with, "oh yeah, you're gonna die just like 20,000 other people with this disease." "The drugs are going to misshape your body." "The side effects will be a bitch." etc....then that only makes the situation worse (well at least to me) and I'm not sure if it's even completely accurate and honest, since such effects varies greatly between people. Sugar coating HIV may seem like it's making light of a serious condition, but I really think the intent is to instill hope about the future and to inform the patient that they should have every expectation that life can and will go on.
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I think much of this may simply be due to the poor language translation. It's difficult to take this passage into the context that author intended, cause internet translation software is horrible.
then i don't think you saw the second translation of this that i did cliff, (see above) i did it myself not via a computer. 8)
the author intended everything he said as reported but who knows how articulate he was at explaining to the reporter what he really meant ?
we have to remember that this comes from a country which, until recently, had the highest levels of AIDS infection in Europe, caused mainly by IV drug transmission in the 1980s. the percentage of the population infected is seven times that of the United Kingdon, for example. we have to bear that in mind before judging him.
a lot fo people say things when they are not HiV positive without having any idea of what effect they have on those of us who are positive, even when they are in the "thick of it" as medical staff.
like i said in another thread recently, when i saw my HiV specialist the day i was diagnosed, his first comment was "well, it's a fantastic time to be HiV positive"
what i mean is that we shouldn't crucify people just cause they haven't thought about and covered every angle before they say it.
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You are right mike. Spain is one the european countries with more HIV infections, mainly because of sharing needles among drug users. Most of the deaths are due to hepatitis-C.
The Dr. who says this is the head of the infectious disease deparment of Ramon y Cajal Hospital in Madrid.
I will edit my first post, with your excellent translation, mike.
http://www.hrc.es/
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I spend several hours with someone today who found out his numbers have gone down the crapper during the last six months.
I know he was suspicious when I showed up at the doctor's office, but I felt I should be there to do whatever I could to help because I know this very young man was going to find it difficult and there was no way the doctor could spare the time with this young man he might need.
Turned out, he did need some time, some encouragement, someone to listen and someone to answer questions and give a hug.
Don't tell me it isn't traumatic to be told you have HIV. Don't tell me it isn't traumatic the first time you see your CD4s drop like a stone and your viral load skyrocket.
I know better. I was there. So does this young man today.
I think this doc needs to have his head examined.
HUGS,
Mark
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I also almost fainted when I won my "Bingo"...
I was told I was positive by a wonderful careworker. She sat right in front of me, knees touching, and she held my hands and told me I was +. The room started to spin, I had tunnel vision, I think I started to scream, and I fell face forward into her lap. She just held me as I sobbed. Chris was kneeling beside me crying. It was the worst thing I have ever experienced.
Christine
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at least you had someone there when you found out.....i didn't even know how I drove home when I was told I was poz.
Justin
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The Dr. who says this is the head of the infectious disease deparment of Ramon y Cajal Hospital in Madrid.
I will edit my first post, with your excellent translation, mike.
http://www.hrc.es/
you're welcome BB :)
i am off back to Madrid on holiday this month and have written to the author asking if he is prepared to chat with me face to face or via telephone to ask him some more questions about his opinions, i'll keep ya posted !
as for the greater impact of the epidemic in Spain, that seems true in most mediterranean countries, Italy,Greece also have high rates compared to curiously low rates in the UK and nordic countries.( comparitively speaking)
stories abound that some anglo-saxons have an inbuilt resistance due to a mutated gene that worked its way into the general population after the black death which killed a third of the population of europe in the 14th century and provides partial resistance in some north europeans or at least makes it more difficult for the virus to get a hold., mostly in the North of Europe, the stats would seem to confirm that but of course there is no way yet of proving that the connection is because of that or even that the anglo-saxon resistant gene exists.
what is true is that in the total history of the epidemic, under 79,000 people have been diagnosed HiV + in the UK until March 2006
http://www.avert.org/stats.htm
that's quite astonishing in a country with a population of nearly 60 million.
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I don't think the difference between the HIV rates in Spain and other Southern European countries as compared to more Northern European countries is due to genetics. It's probably due to Spain having a more conservative culture that was unwilling to initiate some of the programs the other European countries did at the start of the epidemic to limit its impact (this is also explains why the US Has a higher rate than most European countries). Relative wealth also probably has something to do with it (rates of HIV infection tend to rise as income levels decreases). Though that doesn't hold true for the US as a whole, since the country has higher wealth per capita than all European countries, but also has a higher HIV infection rate, (though if you break that down by the various segments of American society, it would still hold true).
Is that gene specific to Anglo-Saxons (Brits), I thought it was for more Northern Europeans (Swedes and other Nordic region folks)?
I thought that gene did nothing to prevent one from getting HIV, that it only made it more likely that the person would become a long-term progressor (i.e., they would become HIV positive but would progress to AIDS more slowly, if at all, as compared to the progression of the general HIV positive population)?
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It is true. In Spain little is done to prevent HIV infection. TV advertisements from time to time, and that is all...But most infections still come from sharing needles and that is why up to a 60% of HIV+ in spain are also coinfected with Hep-C. As my "nice" nurse says: "they have the complete pack".
Mike, we could meet here in Madrid and you could come to visit my Dr. For him this is "only" an infection, resistance rarely occurs if you are adherent, and its much better bein HIV+ than being diabetic or suffering a renal failure. He looks at me as if I was too worried for having a simple cold. I will see him tomorrow...I hate him.
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Juan you are too funny. You should get a new doctor...cause yeah, that's taking things too far. Though having renal failure is a bitch....big time...(my cousin has that) and I think I would much rather have HIV than deal with the crap that she is going through.
But your doc shouldn't be saying crap like that to you, cause it's really not about comparing our disease to other diseases. You should tell him that you don't like the way he talks to you or the way he dismisses your concerns. Or better still, get a new doctor. He works for you. You don't like him....fire him.
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The problem is I din´t hire him. I was forced to go to him by the National Health System. Hiv is not treated privately here. Anyway, tomorrow will be the day...If I still dislike him, I will complain to the Hospital.
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That's strange (and stupid)....that the government doesn't allow you to choose (or switch) doctors under your national health scheme? Or is this just applicable to HIV disease treatment (still stupid if true)?
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its much better bein HIV+ than being diabetic or suffering a renal failure.
I've been type I diabetic since i was 10 ( 30 years ago) on 4 injections a day and i was told last week that i am on the border of chronic kidney disease as they are functioning at 60 % of capacity.
However, my doctor tells me i can happily survive without noticing anything until they drop to 30 % then it's either transplant, dialysis or game over ;D
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I friend of mine fron Holland came to live here to have a kidney transplant. He had to wait foru years in hollad for it. He got it here in one year and a half. This is the country with more donations per inhabitant in the world.
Maybe you could do the same.