re: The Voice of the Patient: Time To Bring Out the Muzzle?

[Rich66]

Avastin complexities aside..not liking the tone taken here:


http://blogs.forbes.com/larryhusten/2011/07/01/the-voice-of-the-patient-tim e-to-bring-out-the-muzzle/ (http://blogs.forbes.com/larryhusten/2011/07/01/the-voice-of-the-patient-time-to-bring-out-the-muzzle/)



(http://www.inspire.com/groups/advanced-breast-cancer/discussion/the-voice-of-the-patient-time-to-bring-out-the-muzzle/#reply)

[Margerie]

hmmmmmm... don't like the line "metastasizing their views" or "bring out the muzzle". I don't think they would title an article about men protesting their cancer treatment options or non-options including the word "muzzle." Certainly the "bring out the muzzle" implies something even more sinister in my opinion, but maybe I am too sensitive.


I do not care for "fear-based" medicine, or being so afraid of dying of breast cancer that I will sign up for a very toxic treatment that may or may not kill my cancer before it kills me. I do know that is a tempting choice and I have signed up for some pretty horrid treatments already to treat my Stage 3 aggressive cancer. It is impossible to remove fear from the breast cancer diagnosis/treatment equation.

But there is a fine line between being an "alarmist" (which I have been called, by other survivors, because I do not eat up what is being fed to me..... and I do not like how breast cancer survivors are patronized and "shh, shh, there, there just do what we say and don't worry yourself because stress will make your cancer come back"), an informed "breast cancer consumer" and a brash fear- mongering "activist".

I just want the facts please. My oncologist will give me the facts, I try to squelch my fear and the nagging "do WHATEVER it takes" thoughts.

Why do we need hearings in the first place?? Because, oh yeah, it is not really about the facts or the best treatment, it is about money and fear. And money. **sigh**

We want better treatments now. Sorry for the ramble.....

[hutchibk]

Not a ramble at all M... very well put. Thanks for posting this Rich. It's very revealing.

There are often times when the media parades emotional patients in attempt to sensationalize an issue... and times when patients use a willing media to sensationalize an issue. THIS IS NOT ONE OF THOSE TIMES. Freedom of access to medicines is profoundly crucial for folks who wish to extend their lives to the degree that they can.

This Larry Husten guy is a supercilious jerk, IMHO.

[fullofbeans]

The journalist is forgetting one basic fact (he obviously is lacking of empathy but not of bad taste: 'matastazing their views'..): a patient is not a statistics!

And indeed if the drug works for even a few, these few will want it, and, who should be in their way to stand in front of them and tell them that statistically they should be dead so their voice should not be heard? This news reporter would also prescribe getting rid of costly neo natal-units because hey after all we have over population..and statistically these babies will have problem in the future so why bother.. where do you stop rationality?

what should be looked at is analyzing the tumours and responses of people for whom it is working so as to be more specific in the future whom should benefit.. in the meantime I like to think that human being are acting from their heart not just their head and therefore we hear people crying for help even if it does not make statistical senses.

[Jackie07]

I clicked on the link to his biography and found this at the end of the brief description:

" I have a PHD in English from SUNY Buffalo and I drove a taxicab in New York City before embarking on a career in medical journalism."

Now we know why he talks/writes like that... Don't know if he took any science/psychology classes. But I'm almost certain that I know a little bit more on how to assess medical information than this Ph.D who applies his English skills to sensational reporting.

[Blondie]

This is an absolutely disgusting article and I don't know how this was able to be printed. Totally unethical!

Medical professionals need to use evidenced based practice- be objective, based on research. However, patients live the experience and are subjective!! If this was written about some other areas of health it would be discrimination and possibly a human rights issue! Some of the wording is highly offensive, unnecessary and nasty!

Blondie