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Author Topic: Confused - appreciate perspective  (Read 1546 times)

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Offline SteveS

  • Member
  • Posts: 64
Confused - appreciate perspective
« on: September 22, 2013, 04:57:55 PM »
Hey -

I am newly diagnosed. Over the past several weeks, I feel like I have been seeing every two or three days major announcements regarding HIV on various fronts. Just a few I remember are Callimune, some gene (MX2?) they discovered in England, the virus clearing in monkeys (Picker?), something about "scissors", something about zinc / fingers, etc, and several more.

To my great surprise - this forum (and any other I am familiar with) don't seem to be discussing these nearly as much as I thought would happen? There is a thread here and there - but not to the degree that I feel like the announcements are warranting.

MY QUESTION - I realize any potential "cure" is years away (testing, approval, etc) and that there is a history of over-hyped bad press, (I tested poz right when the "HIV Cure is 3-6 months away" story hit. Major disappointment. BUT - is ANY of this legit? Why aren't "we" talking about it more? Do you all who have lived with this for SO much longer than me have hope for a cure? 5 years? 10 years?

I realize there is no crystal ball, but many of you walked through the medicine upgrades and are SO smart in how you are tracking this.....I would love some perspective....

Thanks -




Offline Jeff G

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  • Member
  • Posts: 12,819
  • How am I doing Beren ?
Re: Confused - appreciate perspective
« Reply #1 on: September 22, 2013, 05:45:02 PM »
I have been poz for 3 decades , I'm tired of saying 30 years LOL .

I hope for a cure and think the research is promising on lots of fronts . I came up poz in the day where we were told we were going to die , sorry nothing can be done . There were no support groups , no ASO , no doctors that knew what it was or how to manage back to back infections .

I can only speak from my experience but I feel the same as I did back then as I do now and that what can I do today to make my life and others in similar circumstances better . I have to do that because I don't know any other way .

I read and digest the latest good news just like the person who found out they were living with HIV last week but I still see people coming here newly infected , I see people hurting and afraid because of stigma , so I know the cure isn't here today and there is work to be done .

I cant make heads or tails out of some of the research findings and reports but I can get someone to test and I can tell them why they don't need to test and give them the risk factors so that they know how to protect themselves and they know that hugging or even having sex with a person living with HIV is not going to harm them once they are armed with the facts .

I like the word living with in the sentence living with HIV , it means we are not simply existing and that we are moving on in life despite HIV or maybe even to spite HIV . I want a cure but I will not wait for one because I know a cure tomorrow does not make today one bit better .   

Offline Tadeys

  • Member
  • Posts: 162
Re: Confused - appreciate perspective
« Reply #2 on: September 22, 2013, 09:27:04 PM »


Since being dx in November, 2011, I have been OCDing about a cure, sometimes daily, POZ.com being one of my daily stops...:)

  Four years ago, 99% of HIV scientist would have never used HIV and cure in the same sentence. When it comes to the cure pipeline today,  I--and most HIV scientist--feel very confident we will have a cure. When? Don't know. But I think that it will be a gradual thing...therapies initially curing a low percentage of people until the technology is tweeked.

I have seen sooo much cure potential published on this forum since nov, 2011 that I sleep like a baby at night. Perhaps 30/40 different approaches to a cure (gene therapy, stem cells, drugs, therapeutic vaccines) are currently in diferent phases. Just one of these has to work...

And remember, we are in 2013....today science is way better at predicting success than say 10 years ago.

Ciao


Offline Trout

  • Member
  • Posts: 10
Re: Confused - appreciate perspective
« Reply #3 on: September 23, 2013, 02:03:41 AM »
Just curious...how was it back in '95/96 when protease inhibitors introduced? Was it a complete surprise? I realize times were different then without the internet.


Offline mecch

  • Member
  • Posts: 12,070
  • red pill? or blue pill?
Re: Confused - appreciate perspective
« Reply #4 on: September 23, 2013, 02:20:50 AM »
Hey -

I am newly diagnosed. Over the past several weeks, I feel like I have been seeing every two or three days major announcements regarding HIV on various fronts. Just a few I remember are Callimune, some gene (MX2?) they discovered in England, the virus clearing in monkeys (Picker?), something about "scissors", something about zinc / fingers, etc, and several more.

To my great surprise - this forum (and any other I am familiar with) don't seem to be discussing these nearly as much as I thought would happen? There is a thread here and there - but not to the degree that I feel like the announcements are warranting.

MY QUESTION - I realize any potential "cure" is years away (testing, approval, etc) and that there is a history of over-hyped bad press, (I tested poz right when the "HIV Cure is 3-6 months away" story hit. Major disappointment. BUT - is ANY of this legit? Why aren't "we" talking about it more? Do you all who have lived with this for SO much longer than me have hope for a cure? 5 years? 10 years?

I realize there is no crystal ball, but many of you walked through the medicine upgrades and are SO smart in how you are tracking this.....I would love some perspective....

Thanks -

Go to the research threads and talk about cure news, what's stopping you?

As I consume a lot of media, I'm going to know when someone has been cured.
I'm going to know when that cure is rolled out to the public.
I'm going to know when it's available to my friends and myself.

Cure news is a compelling topic for some HIV+, others (like me) are fine with letting the specialists do their thing and just keeping our ears open for anything truly spectacular. 

In the meantime, there's Syria and Miley and the new television season...

There's providing support here for people dealing with crisis in this very moment.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Confused - appreciate perspective
« Reply #5 on: September 23, 2013, 03:15:23 AM »
Just curious...how was it back in '95/96 when protease inhibitors introduced? Was it a complete surprise? I realize times were different then without the internet.



You rather hit the nail on the head. The only people who knew what was in the pipelines were doctors interested in research (except for those involved in the studies), those who read scientific journals (not available online, expensive, and usually located in universities where they could not even be photocopied), and those in the scientific community.

For doctors dealing with AIDS patients, it was very difficult to stay abreast when they were trying, mostly in vain, to keep people alive.

And knowledge is power, they say. With the internet came that power. Yes, there was an internet in 1991 and beyond, but it was extremely difficult to use, grossly underpopulated, and not indexed much if at all.

Finding information was not easy, and not a lot of people had the chops to try. Smuggling illegally photocopied papers from scientific journals and distributing them to homemade ASOs helped inform a LOT of people about the protease inhibitors. The doctors who had the energy and time to keep an ear to the ground did the same.

But remember the time. Many of the people who were gathering this information would be dead before it became a reality. And false hope had certainly been raised before.

There was some stirring of hope, which started slowly and took a year or more to rise into anaudible conversation.  Then finally, the news.

Quote
On November 10, 1996 an article authored by Andrew Sullivan appeared in the New York Times Magazine called "When Plagues End: Notes on the Twilight of an Epidemic." This overly optimistic title reflects part of the tensions that exist surrounding the newest class of antiretroviral drugs known as protease inhibitors. For the first time since the onset of the AIDS epidemic, there is finally a reason to have hope that HIV illness may become a chronic and manageable illness for more than a small minority of those infected.

-Michael Shernoff, MSW, Challenges and Dilemmas Regarding Protease Inhibitors: 1997

http://www.thebody.com/content/art2453.html

It truly was a different time, both in technology and in human interaction.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Nasty Weather

  • Member
  • Posts: 13
Re: Confused - appreciate perspective
« Reply #6 on: October 17, 2013, 08:09:39 PM »
The cynic in me wonders, are they going to find the cure just as the HIV drugs go generic?

Offline mecch

  • Member
  • Posts: 12,070
  • red pill? or blue pill?
Re: Confused - appreciate perspective
« Reply #7 on: October 17, 2013, 08:47:37 PM »
The cynic in me wonders, are they going to find the cure just as the HIV drugs go generic?
Well the "optimist" in me says "THEY" don't have a lock on when and how the cure will be found. I assume you mean, by "they" - evil capitalistic big pharma? 
I'm not up on the real data, but I would guess a lot of research is in universities and science institutes, around the world. 
And anyway, even if you believe in the evils of big pharma, then can't you imagine that big pharma will surely have a way to monetise "the cure"...  Maybe they'll make billions off that, too...  Problem solved. 

I don't mind healthy scepticism about big pharma, or the military industrial complex.  I think a critical approach is healthy... 

On the other hand, I don't think its entirely healthy for HIV+ people to overly invest in these sort of conspiracy theories about big pharma delaying or hiding or burying or preventing a cure for HIV....
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Dr.Strangelove

  • Member
  • Posts: 214
Re: Confused - appreciate perspective
« Reply #8 on: October 17, 2013, 11:24:00 PM »
The cynic in me wonders, are they going to find the cure just as the HIV drugs go generic?

Only 4 more years until Atripla will go generic.

And don't forget that 'pharma' is not a single entity. There are companies that make a lot of money with the current HIV drugs (Gilead) and then there are others that have invested millions on various approaches of a cure (Sangamo, Calimmune) but so far haven't earned a single penny. Trust me, when they find the cure, they are not gonna hide it in their drawer, so that their competitors keep making money on ART drugs for another decade...

 


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