POZ Community Forums
Main Forums => Living With HIV => Topic started by: mikeyb39 on November 29, 2012, 04:10:28 pm
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Does this bother anyone else at all? Or is it just me? it seems that they are only concerned about drugging all those folks that have HIV in order to stop infecting others, rather than also focusing on a functional cure.
i know this initiative is important to get those without care into care, i dont have a problem with that of course, its just the justification of it seems odd
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rather than also focusing on a functional cure.
in the grand-scheme, big-picture view of everything in the world, "they" are doing both concurrently. ;) (by the by, just who are the "they" you are referring to? LOL) Just because some agencies are focusing on one thing, doesn't mean other agencies aren't doing other things. check out the research forums ;) for what all those other agencies are working on. Those are the "they"/scientists working on the cure, while "they"/social workers, prevention and education specialists, and advocates work on transmission issues.
based on the current studies for a cure however, it still seems a long way away yet. heaven knows I've been listening to "the cure is just around the corner" for three decades now, so what's another decade or two in that big picture? ::) I believe it's very important to consider History when talking about this kind of issue - why isn't there a cure yet? Science has jumped by leaps-n-bounds in the 31ish years that we've been dealing with the HIV epidemic. HIV is a very complicated bug and these meds (and the underlying science) are amazing, and simply weren't even dreamed of 40 yrs ago (when I was just in elementary school and HIV was just starting to creep into the States).
So in the meantime, since the cure isn't here to "fix" everything yet, some agencies are focusing on the next "best" option - stopping the spread of HIV. Since HIV is mainly sexually-transmitted it only makes sense to try to stop that vector while we wait on science to bring us the cure. And actually "they've" been working on this issue a long time too; but condoms alone just aren't doing the trick. Hopefully test-and-treat and doing whatever it takes to get adherence levels about 28% in America will knock down that barrier of 50k new infections each year from where we seem to be stuck.
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The last thing the pharmaceutical companies want is a cure or vaccine. HIV medications are very lucrative, with most people having the government pay for their meds.
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Does this bother anyone else at all? Or is it just me? it seems that they are only concerned about drugging all those folks that have HIV in order to stop infecting others, rather than also focusing on a functional cure.
i know this initiative is important to get those without care into care, i dont have a problem with that of course, its just the justification of it seems odd
I agree. Same with WAD coming up, so much focus on prevention, barely anything said about how life is living with HIV. I think its wrong this distinction when we are talking HIV with the general public its always about how to protect yourself, use a condom, get tested and it creates a us vs. them. Once poz its different of course then we speak amongst ourselves, just like we do here but few outside this community really knows whats going on.
To be frank the semantics used is not ok, its spurs stigma, instills fear In the public and pass judgement on people like living with HIV.
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with most people having the government pay for their meds.
that's not really a good assumption as 54% are funded through the government and 46% are not.
36% of PLWHA have the government pay for their meds through medicaid; 4% have Medicare only; and another 14% have dual (medicaid, medicare). So just a little over 50% of PLWHA use the government to cover their meds.
29% are uninsured and 17% use private insurance
Health Care Reform Update and Advocacy Priorities (http://schacctf.org/me4sc/docs/Final__USCA_Health_Care_Reform_Presentation.pdf) by Harvard Law School Center for Health Law and Policy Innovation, United States Conference on AIDS October 2012
SOURCE: Kaiser Family Foundation based on Fleishman JA et al., “Hospital and Outpatient Health Services Utilization Among HIV-Infected Adults in Care 2000-2002, Medical Care, Vol 43 No 9, Supplement, September 2005.; Fleishman JA, Personal Communication, July 2006
Source: Susan Reif, et al., Duke Center for Health Policy and Inequalities Research, Southern AIDS Strategy Initiative, HIV/AIDS Epidemic in the South Reaches Crisis Proportions in Last Decade (2012).
we are talking HIV with the general public its always about how to protect yourself, use a condom, get tested
since not even 1% of Americans (2 million out of 308 million is only .65%) are infected with HIV and 99% are not, it only makes sense that the message to the general public is about protection/education/prevention.
But it's that way with all diseases. The TV doesn't tell me what it's like to live daily with diabetes, cancer, or lung disease - but the TV sure tells me to avoid having those diseases with plenty of prevention messages. However, after you have any of those illness, then there are always plenty of information resources that a patient can find out their illness.
As I tell many people, in training classes who want to advocate for HIV causes, people really only know about the disease they have or that someone in their immediate family has. It's not like our legislators are stigmatizing and purposely mistreating HIV causes, it's that most of them simply don't have the proper education to even understand the illness - much less the needs of those affected by it.
Although there is stigma surrounding HIV, make sure it's real issues of stigma that trouble you, not just the general lack of interest society has for anything that doesn't affect them or their immediate family members. ;)
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I think Common Ground said it best. I don't think those that are infected should be used to control HIV. I agree that we should get folks that need to be on medication on it, but not simply because we hold a responsibliity to be medicated in order to stop the spread.
I just seen a news feed that shows the amount of AIDS infection have dramatically dropped for Africa while the AIDS infections have steadily increased in the US. This is good news for Africa, but this tells me we need to focus more time and money here in the US. We have folks here that need help more and more.
When i say 'they' i'm referring to governments around the world that are part of this initiative. Hillary Clinton stood up in front of cameras with her 'aids free generation' by getting folks on drugs and circumcision of young boys.
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From a societal perspective I don't have a problem with the current policy/social messaging around HIV. If we are going to get to the "End of Aids", the only tools we have right now are ARVs (to prevent HIV from progressing to AIDS) and to stop transmission. The facts are:
1. Only 1/4 of HIV positive people in the people in the US have the virus under control - in other words, 3/4 of HIV positive people in the US are "at risk" to progressing to AIDS. The numbers in many other countries are more dire.
2. There are way more HIV negative than HIV positive people and it is the negative people that are "at risk".
3. A large number (1/4 or more depending on the source) of the people that are HIV positive don't know it - and those that think they are negative when they aren't are more likely to have unprotected sex and thus transmit.
4. Safe sex prevents transmission;
5. ARVs for HIV positive people significantly reduces transmission to HIV negative partners.
As policy makers spend money on public campaigns it is a numbers game - they look to reach the largest number of "at risk" people with a very basic message while spending as little as possible. Thus the message to practice safe sex, get tested, and if you are positive get the virus under control.
From a personal perspective - yes, I wish more people really understood the basics of HIV, but then again I have to admit that I don't claim to understand the basics of diabetes, MS, cancer,or many other diseases that more people have - so I can't complain too much.
JM
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Well if they succeed in creating an AIDS free generation, we would quite literally be a dying breed :P
Quote: "The last thing the pharmaceutical companies want is a cure or vaccine. HIV medications are very lucrative, with most people having the government pay for their meds."
I think HIV vaccines are much more lucrative. Look at polio vaccines. Only very few countries in the world where polio is a problem (3, as per wikipedia) and yet vaccinating against polio is worldwide. Imagine holding a 20 year patent to a worldwide immunization programme! Furthermore, no vaccine in this world works ad infinitum (i.e you vaccinate everyone alive on this planet today against virus X and the human race will never need to worry about it again). So I think they will still be making money long after no new infections occur...
This virus is REALLY very hard to combat. According to some researchers, this virus generates MORE mutations in a single person each year compared to ALL the mutations of the flu virus across the entire globe in a single flu season.
http://www.youtube.com/watch?v=5tckZAGXJQg
I think we'd be able to find the cure to the common cold long before we find a cure to HIV. Not to say I'm not hopeful, humans are very smart...and I prefer using my tissues for something else....
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but not simply because we hold a responsibliity to be medicated in order to stop the spread.
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with her 'aids free generation' by getting folks on drugs and circumcision of young boys.
but isn't that a simplistic view of what is actually happening? We already have, and have had, prevention, education, and treatment strategies in place. It's not being suggested that "treatment as prevention" is the only reason for treatment. "treatment as prevention" is another talking point to go with "treatment reduces health care costs" and "treatment improves quality of life" and the ultimate talking point that "treatment saves lives".
I would suggest that the justification for the extra emphasis right now for "treatment as prevention" is because those other talking points are old and have been in use for years. Those talking points have only gotten the situation so far along (with legislators and funding); while there are recent studies now proving the worth of adding this newer talking point to the discussion. Treatment will always be first and foremost about saving lives. But since that has only gotten the situation so far, further steps should be part of the discussion now.
...while the AIDS infections have steadily increased in the US.
Since our current strategies have reached an impasse with a threshold we've been unable to break, a threshold that's threatening to erode, shouldn't we be talking about the next steps? Obviously for many here, the current strategies didn't work. Whereas if we would have already had a more aggressive test-n-treat model (also using treatment as a way to reduce the infection rate) many of the people who were infected during the 2000s might not have been infected.
You know it's quite possible if a more aggressive test-n-treat strategy (a strategy that would save lives, improve lives AND reduce transmission) had been in place many people here (maybe ever yourself and common) might not have been infected. ;) Surely this "new, improved" strategy can't look so bad in that light, right?
barely anything said about how life is living with HIV.
what message would you suggest be said about living with HIV? How would this message help reduce the infection rate? (as that would probably be the main goal of a government-led health strategy against a disease - to reduce the infection rate) How would your message help those already living with HIV? (as that would probably be the main goal for a healthcare strategy - to improve the life of the patient). I'm not asking this in an antagonistic tone ;) ; but since this newer talking point doesn't seem appealing to you, I'm wondering what you would rather have it be.
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Well if they succeed in creating an AIDS free generation, we would quite literally be a dying breed :P
that's one place where I definitely agree with Mikey. I sure hope (as an HIV+ person) that "they" develop a "functional cure" first - rather than a vaccine ;) A vaccine would put us at risk of greatly reduced funding, care, and concern. :(
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As a recent seroconvert, I hope for a functional cure too...unfortunately, they aren't as lucrative as vaccines....
unless alot more people are infected...hrmm.. :P :P
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i'm not sure what the talking points sould be either honestly. It all just sounds like something Hitler did back in the 40's trying to eradicate a race. drugging all the diseased folks, circumcising the young, stopping mothers from breastfeeding, stop us from having sex....I wonder what the next measure will be.
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i'm not sure what the talking points sould be either honestly. It all just sounds like something Hitler did back in the 40's trying to eradicate a race. drugging all the diseased folks, circumcising the young, stopping mothers from breastfeeding, stop us from having sex....I wonder what the next measure will be.
Hitler? Really?
I definately understand how it is an emotional blow when you are infected with a disease causing virus and the government strategy is geared more towards preventing new infections and not so much on finding a cure for those who are already infected. However, this is not unique to HIV and it really does make sense for public health to focus on prevention versus cure research.
Just think about some other preventable diseases; Diabetes, Heart disease, hepatitis, etc.. most of the public health focus is geared to preventing new disease. We are told to eat right and exercise and wash our hands and have safe sex to prevent new disease.
Versus disease that are not preventable much of the government focus is on treatment (most cancer spending is on treatment).
It does come down to economics, you have a limited amount of resources so how do you spend your resources so you get the most benefit?
Side note though, the reason there is not a cure for HIV is not due to a lack of research or a lack of funding (my personal opinion). I beleive there is not a cure because its a super complicated virus. Would spending another $50 million or $100 million really change the course of when a cure is discovered? Maybe, maybe not.
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CNN has a few videos / interviews on it's site today.
This one starts out about the Berlin patient but goes on to interview Dr's and their commentary on a cure.
Check out the other videos too.
http://www.cnn.com/video/?hpt=hp_t3#/video/health/2012/07/23/pkg-gupta-hiv-cure-agenda.cnn
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The last thing the pharmaceutical companies want is a cure or vaccine. HIV medications are very lucrative, with most people having the government pay for their meds.
What kind of flimsy argument is this?
HIV medicine is lucrative, yep.
And what is your explanation why a cure or a vaccine won't be lucrative?
The Hep C cure coming out in a year or two. Think they will be giving it away? The market for the hep C cure is estimated at many many many billions of dollars. BILLIONS.
Not sure how your "who pays for it" point matters to the drug companies, furthermore.
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Mikeyb39. Sounds a little bit like you think HAART is bad, or poisonous, or that you are afraid of it? Or?
I bet very few people on HAART think someone, the nebulous autocratic "they", have forced HAART on anyone. I don't feel warehoused, maintained, corralled for protection purposes, used by Big Pharma, etc etc etc. Few side effects and I get to live my normal life. Why are all the benefits of HAART somehow dark, plot-like, to you?
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The Hep C cure coming out in a year or two.
There's been a cure for hep C out for years now. I was cured of hep C ten years ago. It doesn't work for everyone - and the new meds they're adding don't work for everyone either, but the success rate is slowly improving.
The treatment for hep C is VERY expensive. I forget the exact numbers now, but a month's worth of hep C treatment cost about the same as two or three months of hiv treatment ten years ago. It might have been even more - I don't remember the exact figures but I remember being absolutely gob-smacked at how much more expensive it was than hiv meds. And now they're adding in another drug, so it's going to be even more expensive.
It's a really difficult-to-tolerate drug regimen as well. Not nice at all. It wouldn't surprise me if any cure for hiv is just as nasty and even more expensive.
I think these conspiracy theories about big pharma not wanting a cure for hiv to be... well, just ludicrous. There's big bucks in them thar hills cures!
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Hi Mecch
Nah i think HAART is great, thankfully we have it for sure. I was just maybe thinking too much in the messaging aspect of this new initiative. I have no problem with meds.