Adherence and the curious crowd

[Iggy]

Mark,

Who knows - It might be popular....I is no longer a yoot so I can say for certain that they will react as I would.

Worst case scenario - the program has an idea of how to not market it in the future.

Good luck

[David_CA]

Mark - This may sound incredulous of me to suggest - but I'm gonna anyway - Does the word "safe" have to be in the title of the program?

Good call, Iggy.  Maybe we should just call it HAG instead!   

[sdcabincrew74]

Although I am 33, I guess I am one of the younger crowd since I was diagnosed with AIDS, PCP and MAC 2.5 years ago.  Honestly, I probably would not go to this seminar for the following reasons:

1.  I refuse to be blamed for failure of the meds.  I take my meds religiously and have only ever missed one dose due to not being able to keep anything on my stomach.  However, even with perfect adhearance meds still fail and I am sick and tired of hearing that it is the patients fault not the lousy toxic drugs and the clever virus.

2.  HIV is not my whole life.  It is simply a small part of who I am.  Right now, I am doing good, my meds are working and my side effects are minimal.  I will continue to take them with near perfect adhearance and hope for the best.

3.  I am not real fond of drug companies at this point in life.  I think they over market and are too driven by profit.  Medicine is supposed to be about HEALING, not creating expensive pills that people must take for the rest of their lives and bankrupt the individual and the society.

4.  I live with HIV every day and really sometimes get sick of hearing about it.  I am not saying I ignore it but again it is just a SMALL part of who I am. 

Maybe I am ignorant.  I do the best I can with what I have got and try to live to the absolute fullest, because hell, tomorrow we all could be dead. 

[Iggy]

Although I am 33, I guess I am one of the younger crowd since I was diagnosed with AIDS, PCP and MAC 2.5 years ago.  Honestly, I probably would not go to this seminar for the following reasons:

1.  I refuse to be blamed for failure of the meds.  I take my meds religiously and have only ever missed one dose due to not being able to keep anything on my stomach.  However, even with perfect adhearance meds still fail and I am sick and tired of hearing that it is the patients fault not the lousy toxic drugs and the clever virus.

2.  HIV is not my whole life.  It is simply a small part of who I am.  Right now, I am doing good, my meds are working and my side effects are minimal.  I will continue to take them with near perfect adhearance and hope for the best.

3.  I am not real fond of drug companies at this point in life.  I think they over market and are too driven by profit.  Medicine is supposed to be about HEALING, not creating expensive pills that people must take for the rest of their lives and bankrupt the individual and the society.

4.  I live with HIV every day and really sometimes get sick of hearing about it.  I am not saying I ignore it but again it is just a SMALL part of who I am. 

Maybe I am ignorant.  I do the best I can with what I have got and try to live to the absolute fullest, because hell, tomorrow we all could be dead. 

I'm not certain what # 1, the first half of #2, #3, and the latter part of #4 have to do with not going to a seminar and discussion about adherence issues.  Seems like many of your points would have been perfect for the discussion  Can you elaborate?

On a related (but not personally directed at you) note, I think the phrase "HIV is not my whole life" is a straw man argument.  Not picking on you  and hope it doesn't read that way, but I'm tired of the phrase being intoned in so many instances on this board.  In this case for example, I don't get what either HIV being a small part of your life or a major part of your life has to do with attending a discussion on adherence issues. 

[PeteNYNJ]

This might be a silly question, but where all the people you invited currently on medication?  Maybe if some weren't they didn't see the value of attending at this time?

I am a relative newbie and since I am not on meds I would not attend a lecture like this (unless you invited me Mother Mark).

It is the way I tackle things in life, if I am hit with too much info and don't have to apply it to my everyday I would forget it. 

When I do start meds, I will certainly talk to my doctor about adherence and would also attend a seminar regarding it to get tips since I do have issues remembering to take the few non hiv meds I am on now everyday.

Also, can someone explain the Railroad or Train track analogy?

Pete

[Miss Philicia]

I really think this issue is as simple as the younger, newly diagnosed crowd tend not to tap into ASO seminars until they are having severe issues, and generally for most this is going to come later in their HIV-life.  Personally I went to a "closed" small support group during the first year of my diagnosis and found it only moderately helpful.  There was nobody there my age, most had been diagnosed for much longer, and many were in an advanced infection stage.  The latter fact did not bother me so much as I'd previously encountered this up close with a friend of a friend who was wasted and had KS.  Still, for most people this would freak them out.

I did not start tapping into the ASO/support network until six years or so into my diagnosis when I started to have multiple issues, and even then I was sometimes wary of support groups as I got horribly bored listening to two hours of complaining.  OK, that's not fair -- usually only half of it was boring and the other half interesting, but like anything it just depends on what is being discussed and what people are present there.  I also didn't find such places a "meat market" but yeah, there were times when someone was cruising me in the meeting but *hello* there IS an ignore button in life, just like at your local gay bar.  I'm quite skilled in pressing this.  It was never an issue that interfered with the ASO/support environment for me.  In fact, I'm  sure for many they find it quite useful in scoring digits.  I think I was often simply already seeing someone and my tea card was full.

[aztecan]

Although I am 33, I guess I am one of the younger crowd since I was diagnosed with AIDS, PCP and MAC 2.5 years ago.  Honestly, I probably would not go to this seminar for the following reasons:

1.  I refuse to be blamed for failure of the meds.  I take my meds religiously and have only ever missed one dose due to not being able to keep anything on my stomach.  However, even with perfect adherence meds still fail and I am sick and tired of hearing that it is the patients fault not the lousy toxic drugs and the clever virus.

2.  HIV is not my whole life.  It is simply a small part of who I am.  Right now, I am doing good, my meds are working and my side effects are minimal.  I will continue to take them with near perfect adherence and hope for the best.

3.  I am not real fond of drug companies at this point in life.  I think they over market and are too driven by profit.  Medicine is supposed to be about HEALING, not creating expensive pills that people must take for the rest of their lives and bankrupt the individual and the society.

4.  I live with HIV every day and really sometimes get sick of hearing about it.  I am not saying I ignore it but again it is just a SMALL part of who I am. 

Maybe I am ignorant.  I do the best I can with what I have got and try to live to the absolute fullest, because hell, tomorrow we all could be dead. 

In regards to No. 1, The presenter did not blame anyone for med failure. All he did was point out how adherence is more beneficial than non-adherence. Oh, and he did discuss the reality that meds fail simply because meds fail and even went into some detail as to why this happens.

Regarding No. 2, If that is how you view your life as it stands now, more power to you.

Regarding No. 3, I think we all have a love-hate relationship with big pharma, but that doesn't stop me from taking advantage of programs like this.

Regarding No. 4, I understand and agree with your point, although I don't agree with the "small part" comment. It makes too many inroads into my life to be considered a "small part." I am pleased, though, that, at this time, it is a small part for you and I hope it continues to be so for many years to come.

HUGS,

Mark

[aztecan]

I really think this issue is as simple as the younger, newly diagnosed crowd tend not to tap into ASO seminars until they are having severe issues, and generally for most this is going to come later in their HIV-life.  Personally I went to a "closed" small support group during the first year of my diagnosis and found it only moderately helpful.  There was nobody there my age, most had been diagnosed for much longer, and many were in an advanced infection stage.  The latter fact did not bother me so much as I'd previously encountered this up close with a friend of a friend who was wasted and had KS.  Still, for most people this would freak them out.

I did not start tapping into the ASO/support network until six years or so into my diagnosis when I started to have multiple issues, and even then I was sometimes wary of support groups as I got horribly bored listening to two hours of complaining.  OK, that's not fair -- usually only half of it was boring and the other half interesting, but like anything it just depends on what is being discussed and what people are present there.  I also didn't find such places a "meat market" but yeah, there were times when someone was cruising me in the meeting but *hello* there IS an ignore button in life, just like at your local gay bar.  I'm quite skilled in pressing this.  It was never an issue that interfered with the ASO/support environment for me.  In fact, I'm sure for many they find it quite useful in scoring digits.  I think I was often simply already seeing someone and my tea card was full.

Hey Philly,

Yep, I think you hit the nail on the head. I tend to be a bit anal about things, so I probably come across as overzealous. But I think you may be right. Until something becomes a problem, most people don't think about it.

HUGS,

Mark

[Miss Philicia]

Hey Philly,

Yep, I think you hit the nail on the head. I tend to be a bit anal about things, so I probably come across as overzealous. But I think you may be right. Until something becomes a problem, most people don't think about it.

HUGS,

Mark

You're still the bestest, caring ASO-er in the world, Mark.  I wish you were my personal contact here!