Write a Comment
5 Comments
Excellent. Perhaps you were partially influential in the change. I hope they take your constructive criticisms to HAART (bad pun). And I thought your future blog posts were going to be much shorter? ;) Nice work. Thank you.
Why aren't more people saying this you ask? Fear. It is fear. Fear of going against the new 'thing'. Fear of appearing not to be on the edge of things, regardless if it is the precipice of new discovery or a blind cliff. Fear of being held accountable for one's words. Fear of appearing to think for oneself in a time and place where cult-of-personality leadership supports no free thought at all. Fear of appearing to have a different view than one's superiors or funders. Gutless, self-protecting fear. Almost like we forgot this issue is and always has been about life and death. I'm not afraid. What are they gonna do to me...give me AIDS? ;-) Hang in there Sean. Keep speaking the truth in plain language. People can blow me off because I can be labeled a 'nobody'. I mean, who IS Mark Peterson, Director of MI-POZ? A nobody PWA from a Midwest state. Not like people like me get heard or invited to 'think tank' symposiums or advocacy forums on the hill. All I have and all we have at MI-POZ is our truth. So, the more you speak yours, the louder ours sounds ;-)
Excellent piece of work Sean! Thank you for bringing this “could have been obscure” change to the community’s attention. Much appreciated. However, I feel the issue is larger than Project Inform’s change of HAART. As a man living with HIV that also practices AIDS medicine I see HIV and treatment from a very unique vantage point. (Or at least I try to I should say.) With over 300 patients as my caseload I still see patients being confused about ART, what to expect, and what not to tolerate from their primary care providers. A lot of education still needs to be done. The “when to start” issue is just one of the pieces that needs to be addressed. I am still amazed how little side effects, especially pain, are being adequately treated when a new patient enters my practice. I hear time and again something like “my last doctor told me he did not believe in pain management”. I am astounded over what people put up with. These are usually the people that also have very shaky viral control and yet their former provider never mentions changing therapies or other options. This is nonsense. We are still living in an HIV world where myth rules over reality. I do not have that luxury. I live with AIDS and practice AIDS medicine so I do not allow my head to be stuck in any sand. Maybe the PI debacle will help open up conversation about what really matters…being healthy and living with HIV for a very long time. Richard Ferri, PhD. ANP, ACRN, FAAN
GREAT WORK, SEAN! Treating everyone infected with HIV as if they are all the same, goes against everything I have witnessed as PWA, as a gay Manhattanite since 1979, and more importantly, as the last surviving co-founder of the PWA self-empowerment movement and co-author of the Denver Principles. I urge all my gay brothers to get as many different medical opinions as possible before jumping on this new rush-to-treatment bandwagon, the way so many of my dear, departed friends jumped on the AZT bandwagon of the late 1980s. Back then, recommended AZT doses were 2 to 4 times higher than they should have been, as we later learned. That mistake cost many their lives in the form of "AZT-induced lymphoma". The best advice is to read as much as you can and think for yourself before you leap. I was able to avoid taking any anti-HIV meds from 1985 when I tested HIV positive until 1996 when I needed them. But, I also had safe sex the whole time so as not to tax my immune system further with any sexually transmitted viruses and infections. If the LGBTQ movement of the past 40 years could be summed up in one phrase it would be this: WE ARE NOT ALL THE SAME--AND WE DON'T HAVE TO BE. That not only applies to our spirits--it applies to our bodies, our genetics and our immune systems, as well.
Anonymous
Not the best reporting you have every done. Wow you got them to change two words! The bottom line is that individuals are not able to stop the progression of the disease and without treatment it will continue to spread. I applaud Project Inform's leadership by getting activist to at least discuss the issue at hand. Statistics show that untreated individuals will not seek care and treatment until serious health issues arise. TLC+ is a sound responsible response to the epidemic!
May 5, 2010