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OK it's official, patients know more about HIV than their doctors think

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News story on 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."


- matt

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This is very interesting Matt. Thanks for the confirmation about knowing more than my doctor. I knew she was

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?

Andy Velez:
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?

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).


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