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Author Topic: OK it's official, patients know more about HIV than their doctors think  (Read 5460 times)

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Offline newt

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  • Posts: 3,885
  • the one and original newt
News story on GAY.com: Doctors and patients differ over treatment

"Doctors and patients have very different priorities when it comes to deciding on HIV treatment, a recent survey by the International Association of Physicians in AIDS Care (IAPAC) shows.

Several findings from the IAPAC survey of doctor and patient opinion stand out. One is that patients consistently experience a much higher level of side effects from anti-HIV drugs than their doctors realise.

Another is that, despite this, patients actually thought side effects were of less concern to them than drug resistance when it came to their choice of antiviral regimen – contrary to what doctors thought.

Another is that doctors think their patients are pretty ignorant about HIV and don’t take in a lot of what their doctors say – patients, on the other hand, insist they know a lot about HIV and always listen to their doctors."

etc

- matt

Now playing - Kate Bush : Wow & Madonna : Hung Up (Radio Edit)


"The object is to be a well patient, not a good patient"

Offline CowboyPOZ

  • Member
  • Posts: 61
This is very interesting Matt. Thanks for the confirmation about knowing more than my doctor. I knew she was screwy.lol

Offline DingoBoi

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  • Bailey's Infected Cream™ Served since 2004
i think based upon research of the side effects, many of us tend to try to 'suck it up' and persist.

When my doctor asks, 'how are you doing', I tend to answer with pretty good (considering what I know about how worse it can be in side effects).   I tend to minimize the effects on my life, like diarreah, depression, cognitive disorders and such.

It seems like I want to please my doctor and make him happy (revelation here)... that he is doing a good job.  I don't tend to complain about the issues the drugs cause me, becuase, like most people.. i know and expect them.

I figure, well.. it's better than being dead. Not much i can do about it, so why complain about it?


Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 24,914
Actually this is old news that continues to be current news.

One of the key points activists were making in the 1980s and early 1990s was that those who were living with the virus knew lots of important things about which the scientific and medical establishment did not or which they were overlooking. Like among other issues, how differently the virus (and treatments) affected women and children.

Of course mothers have always known things about babies which pediatricians continue to poo poo as they shake their heads and smile condescendingly at them.

The thing is that it takes real grit and determination to press on in the face of that kind of attitude. Which is another reason why it's great that people can ask questions and get support here. And take it back out into the HIV world beyond these pages.

See with a lot of doctors it's like weather people. The weather people usually don't have windows at work so they don't know what the f is going on in the real world. Get my drift?
« Last Edit: June 03, 2006, 11:34:44 AM by Andy Velez »
Andy Velez

Offline terpie82

  • Member
  • Posts: 97
Experience always stomps education I say. Doctors may have their MDs, scientists may have their PhDs but unless they know what it's like to live with the virus, to be motivated to know everything you can about it while continuing to have faith for a cure, their education is meaningless without our experience. That's also why when apply for a job, experience often supplements and can often replace education level...but it's not as easy the other way around (it may actually look bad).
Diagnosed in 2003
UD since 2004 and >35% (with one blip)

Offline HIVworker

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  • Posts: 918
  • HIV researcher
And there we come to the power of this forum. It is hard to guess what might be a dominating reason for choice of meds and as a scientist you can think you know what is important - keeping the virus down. I think it is a pretty obvious gap in understanding that is in part based on the two outlooks. The doctor who is thinking of what is best to keep the virus down and the patient who has to take the medication and live the day-to-day. I think that it is a bit harsh to claim that the doctors know less, but rather to point out that they have a serious disconnect with what makes a viable therapy.

The power of this forum is that you state your opinion on current medications....and I for one am reading. While from a scientific standpoint we work on resistance a lot, the side-effects issue is often not given the time that is obviously required. It's not that we shrug and say side effects are acceptable, but the two are of equal importance. You can not, with the best will in the world, ever know what it is like to live with HIV.... unless you live with HIV. So those of the medical profession need to do their homework - because one of the more important things to do is to listen. I have reported many times what I have read on here to our group - the one I always quote is DingoBoi's "Damn these Pills" blog. You can think you know all about HIV and pills and not guess that taking medication is not liked as it serves as a constant reminder of the disease. What I learned from him is that fewer pills per day will help, but what is really required is that you get OFF medication for good. It has been a goal for some time, but it gives the goal new perspective. It's not that people don't know that side effects or taking lots of pills is a bad thing, it just didn't rank as high as people expected.

So please continue to complain about the slow-footed medical industry because you remain the most vital resource.

R
« Last Edit: June 03, 2006, 04:02:14 PM by HIVworker »
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline DingoBoi

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  • Bailey's Infected Cream™ Served since 2004
wow, somebody actually reads mah blogs  :o

Offline HIVworker

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  • Posts: 918
  • HIV researcher
wow, somebody actually reads mah blogs  :o

All the time. I still think Puppy London should have his own "And finally..." segment in your blogs. I might not report on that to the group - unless it's very cute  ;)

Keep up the good work Dingo...

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline DingoBoi

  • Member
  • Posts: 1,355
  • Bailey's Infected Cream™ Served since 2004
actually, that's a good idea  :o

Offline HIVworker

  • Member
  • Posts: 918
  • HIV researcher
I PMd you with that idea but you never replied. :(

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline Lisa

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  • Posts: 1,240
  • Formerly known as sweetieweasel/Joined Nov. 2004
    • http://www.myspace.com/lisanowak58
R,
You make an eloquent, and precise point in my opinion.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline Christine

  • Member
  • Posts: 1,069
I tell my doctor everything- good and bad. I have been with her for close to 11 years now, so I feel comfortable spilling it all. This past year, she had experienced some health problems herself, and was talking to me about fatigue and nausea. She said prior to her problems, she thought she understood how her patients felt, but after personally experiencing it, she said she had no idea how bad the fatigue and nausea could be. Some things one has to live through to completely understand how it feels.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Cliff

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  • Posts: 2,645
News story on GAY.com: Doctors and patients differ over treatment
Another is that, despite this, patients actually thought side effects were of less concern to them than drug resistance when it came to their choice of antiviral regimen – contrary to what doctors thought.
I'm not sure I understand this issue.  Why would doctors believe that side effects were more important than drug resistance when choosing a regimen?  Seems common sense that patients would assume that drug resistance is important (you can get around, deal or tolerate side effects...at times...but you can't do anything about resistance once you've got it...well maybe play resistance strains against each other, I suppose).

In the end, though, this all boils down to communication, or lack thereof.  Patients trying to please doctors by not giving them the complete information, patients believing that doctor knows best so they skip the section where they should explain their treatment goals/philosophies and doctors not taking the time (or not having the time) to obtain this information.  Without communication, is there any wonder that the two groups can't see eye to eye...
« Last Edit: June 03, 2006, 07:09:43 PM by Cliff »

 


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