Is HIV a long-term manageable illness?

[Boo Radley]

If you vote please post your reason(s) for your answer.

PLEASE NOTE: The Management reserves the right to swiftly and decisively react to all flamers!  Civilized (or civilised, if you prefer) discussion only, please!

[AlanBama]

I voted 'too soon to tell'.....who knows, all of us who have been fighting this for 20 years or more may drop dead of some mysterious new illness related to so many years of meds......or, we may live to be 90.   

I'm sure someone will bring up "what is your definition of manageable?".   I manage fairly well, most days....but I sure would LOVE to have the opportunity to see how I'd be managing my life if I didn't have this virus.   All we can do is play the hand we were dealt....and I'm still in the game.

hugs,

Alan

[skeebo1969]

     Depends on what is meant by manageable.   My life sucks right now.  While I may not suffer from OI's and the such... everything else has gone to hell.   

     I guess some would say it is a manageable illness...    I just don't think anything that can go out of control whenever it likes is lending any power to me in the management area...  kinda like my ex I guess!  Just pop up twelve years later and wreak havoc, sorry I am straying.

  Thomas

 PS I am the one no vote

[aupointillimite]

I voted too soon to tell.

PIs have only been around for 10 years, and while I am a bit too young to remember the 1980s, I do remember the big deal that PIs were when they were approved for treatment.

This is still a new epidemic, as these things go... and probably one that is fairly unique.  How many other long-term viral infections have reared their heads in the modern era?  Not too many.

I think we're still heading for uncharted waters; ones that I personally look forward to with guarded optimism... but 25 years isn't a long time... we've learned a lot, but I think every person on here who lives with HIV and lives well is another tally in the yes column... I hope there are many more.

[Queen Tokelove]

I voted too soon to tell

The reason being that I have only been infected for 9 yrs. I am not on meds yet but that may change soon. And from the changes in medication for hiv/aids, I feel that I could live a manageable life. As you well know, it affects us all differently. When I first found out I was infected, I thought it was a death sentence. Of course, now I feel differently, I feel life is precious.

[GSOgymrat]

I said yes. I think most people who are newly infected, have access to good medical care and medications and who don't have other preexisting illnesses (heart disease, diabetes, clinical depression, etc.) should be able to live a long time with a good quality of life. Medical science keeps advancing and who knows what treatments will be available in 20 years.

[ademas]

I don't know.  There are just so many factors...
I truly hope so.

(Did anyone happen to catch the PBS special on Frontline about "Living Old" last night?  It brought up some interesting points on healthcare, and how we've become so good at treating the life-threatening, catastrophic diseases, and yet not-so-good at treating many non-lethal chronic conditions that have a huge impact on quality of life.  It wasn't directed at HIV at all, but there were certainly parallels.)

[MSPspud]

While I'll fight tooth and nail to say there isn't some manageability for many, I also admit it's too soon to tell - at least in the scope of 30 to 40 years.

[woodshere]

I voted yes. Compared to 10-25 years ago look where we are.  Perhaps I am a little optimistic, but I have no reason to think that my life will be cut short due to HIV.  Sure we have side effects to meds and there is still much to learn, but can't that be said from women who have breast cancer, those who suffer kidney disorders, or have heart conditions.  I would say many of them could say the same thing about their meds and about the changes that have occurred in their lives.  Perhaps the biggest thing holding us back from calling this a manageable illness is the stigma that is attached especially in middle America.
Woods

[bear60]

I voted No, because everyone I know who was HIV positive from 15 years ago is dead or dying or on disability from HIV and the side effects of HIV meds.  I just hope that those who contract HIV today can have a better prognosis. Perhaps tomorrow will be bring better news for all of us.

[pozguy75]

I voted no, only because for those who have the means and access to medical and treatment, maybe...those who don't...then it's not.

Take for instance, South Carolina, only 20 minutes from where I live...3 people died last year because the waiting list for meds is so long...manageable?? You tell me.

[thunter34]

There is something profoundly sad, sickening and infuriating about that.

Would that be death by red ribbon or red tape?

~+

[pozguy75]

There is something profoundly sad, sickening and infuriating about that.

Would that be death by red ribbon or red tape?

~+

Unfortunately I think it's both!

[GSOgymrat]

I think it's a given that if you don't have access to medications and medical care your HIV infection isn't likely to be long-term or manageable. That goes for most illnesses.

[Just John]

Depends what you mean by "manageable", I sometimes think it's killing me from the inside out -- but it's too soon to tell.

[poet]

I voted yes.  I was around, infected in 1984, when any choice led to death for almost everyone I knew.  We now have the medications which, if followed properly, should allow- in my case, have allowed- control over hiv.  Yes, problems are being caused by the medications but then each of us has potential problems built in thanks to genes, no?  A family history of cancer, heart conditions, etc.  I am not blind to the limitations imposed by Ryan White in far too many states, but, honestly, I moved from New York which had none to Massachusetts which had none, taking my need for programs into the decision.  I would not, could not, have moved to certain states and I hope that those in these states know that if you or your friends run into limitations, please, please put your healthcare needs up front and move.  Win

[LoriTomatoe]

I voted yes.  I sure hope it is.  I have had my HIV positive daughter since birth and at age 3 I was finally able to adopt her.  She is now almost 5 and if I do not believe it is managable, how will I ever convince her?

[Life]

I voted yes...  I trust in what my doctor tells me.   Whats new on the horizon for drug therapies will only improve.  I am taking care of myself and doing what I am told and trying to believe what the expert community tells me... I feel I have developed a very close relationship with my doctor and I know he would tell me whats on the radar screen honestly and openly.

Is this being to optimistic?  Not for me...  Having faith, trust in a system that scares the shit out of you is hard enough to have faith in....  I think we all have to come to our own personal conclusions as to what life holds with hiv (or any other disease at hand) and no one is going to come to one consensus on this recurring topic...

[blondbeauty]

You all kow how optimistic I am but I voted too soon to tell. Until we have meds not prone to resistance, failure of meds to work is possible for any of us. I am optimistic and think that, for most of the people starting meds today, this should not be a problem. But it is a problem for thousands of people who started decades ago. Until that gap is not covered, it can´t be considered completely manageable.
Lets see if, with the development of integrase inhibitors, maturation inhibitors and more entrance an fusion inhibitors (oral hopefully) resistance becomes something from the past. That day it will be really manageable.

[poet]

What I have wanted to know is why this question is posed in 'Off Topic' as opposed to 'Living With HIV?' If the creator of it happened to put it here, that's fine, but if it got moved here and left here, isn't this what that area is supposed to be about?  Win

[Cliff]

I doubt it was moved.  When the moderators move a thread, the original thread remains with a title change that says the thread has been moved.

[NightmareHall]

*

[RAB]

I suppose the good news is how many of us who have been positive for over 20 years honestly thought we'd be here today?

But living with HIV for so long, I'll have to hire a manager  just to manage all the appointments, bills and fights with insurance companies and disability and other stuff that managing this illness entails.

Nightmare, you've hit the nail on the head guy. 

How many of us thought we'd actually make it this far?  Yet here we are.

Your second point using the metaphor of being a slum lord was perfect.  I loved it, it is so true.  If you find a good "manager" will you let the rest of us know?     Yet we are here, we are surviving, and I guess considering the initial prognosis, we are "managing", it's just not where we thought we'd be. 

For me, that's o.k. too.

RAB   

[Moffie65]

I answered NO, simply because this is not the correct question to ask the "undead". 

Now, if you were to ask this question in Nairobi, Dar es Salaam, Mumbai or any other large metro area outside of the Westernized nations, and ask it to people who are living from day to day, with no access to medications; then of course the answer would still be NO!

If you were to ask the people in my neighborhood who have already died, who were not served by the crooked contractor of Ryan White Services; then of course the answer would also be NO!

Now, for perspective, I would like to pose another question.  How manageable is HIV going to be when 2,200,000 United States citizens have HIV, instead of the current 1,100,000?  Or, what will manageability look like when many of the current survivors come to the brick wall where all the medications will not work with their particular MUTATION of HIV?  Or, what will manageability look like when the government finally realizes that it is truly costing approximately $600,000 for a lifetime of medications and medical support for each one of those 2.2 million people?  When the Baby Boom reaches retirement in about a year; what will it look like to the general population to sustain 2.2 million people at a cost of $600,000 for a lifetime of medications and care?

Gotta say here folks, our "HIV Manageability" has absolutely nothing to do with anything but DOLLARS AND CENTS.  Now for you who are self assuredly sitting there and saying there is not a problem because I have medical insurance; I have news for you.  Sometime along the line, HIV will come up from behind and smack you upside the head with a 4 X 12, and then you will have to quit work, look for support from the "Social System" to keep your disease "MANAGEABLE", and hopefully while you were sitting in your office, not paying attention to what is happening to the "PUBLIC HEALTH SUPPORT SYSTEM"; there will still be money left to help you keep your terminal disease 'MANAGEABLE".

You can call this response "Flaming" and yes you would be right!  I have absolutely no tolerance for the word "MANAGEABLE", simply because there are absolutely no Medical Professionals who are actually living with HIV who call this a manageable disease.  This term originated in the Halls of Congress and not from the elected politicians that you sent to Washington from your State, Community, or Town.  No, this was a term that was created by the Pharmaceutical industry Lobbyists, to "SOFTEN" the urgency of funding assistance for Ryan White, in one of the most conservative times in our history.  The thinking is assumed to be that if the Government will keep the flow of monies to the Drug Companies to keep us all alive; then it would follow that you can slash the dollars that were aimed at the services that the Ryan White CARE Act supplied in the recent past.  Unfortunately, for many in primarily the southern states, this hasn't worked out, and while many of our HIV brothers and sisters were waiting for their names to reach the top of the ADAP lists in their states; THEY DIED.

MANAGEABLE INDEED!!!!!!!!!!!!!!!!

Something to think about when asking such shallow questions.

[skeebo1969]

  Moffie the truth is not flaming at all.  From reading all the post in this thread I think most of the participants have this "Keep your fingers crossed mentality"...    Just from our infection standpoint we should all very well know that won't cut it..

  My vote is still very much NO

[woodshere]

Well said Moffie.  I originally voted yes, because for me at this moment it is manageable.  If I look at the big picture in the US, I would think it is too early to tell and on the international level a definite no.  I greatly appreciate the efforts of those who struggled in the early stages of this mess to fight for more funding, more research, better access to drugs and a greater understanding of what it means to be HIV+ or have AIDS.  For due to their diligent work things are much better for me.  The problem is so many, myself included, try to compare being diagnosed HIV+ today as being told one has cancer or diabetes.  I must confess, right or wrong, that is the way I perceive my recent diagnosis.  Fortunately people like yourself make me think  and realize that we cannot become complacent and must continue to push for all that those before us fought for.

[megasept]

Yes, it's manageable.  Of course, "manageable" was not defined. I have discounted the quality of life issue, in answering---if you are still here breathing and thinking---then it's "manageable."

I chose "manageable" for a couple simple reasons:

First, North American mortality rates (I am aware of the increased suffering of our African brothers and sisters---and elsewhere) plummeted in the 1990s for poz people. This is factual. This was good news. I don't totally understand it, since access to better treatment may not be the only cause. It has remained so low that those who do die (of OIs), are all but ignored (by the general public) as HIVers who finally succumb to the epidemic.

Saying "manageable" actually holds people and society accountable for much of the needless suffering. People in rich counties (advanced medicine, many MDs), and just countries (access to high quality treatment, including expensive meds), have fared better, than a majority with HIV. Large areas of Africa and parts of Asia are a medical and social disaster. Politics intersects with medicine. Of course,  I lost many friends and acquaintances to HIV in the 80s and a bit beyond; I believe downplaying the significance of the mortality rate drop actually disrespects the individuals we have lost. And let's not forget the medical professionals who have worked tirelessly on our behalf for two decades! For me, good politics does not start with ignoring facts, but in combatting the distortions of facts by opportunists of many stripes (Remember "The Cure Project"?). Sure, we have enemies who are only too happy to see us die off (quietly, quickly, and cheaply).

Secondly, I have survived all this time (15+ years), and continue to live a robust physical life as well. Without a crystal ball, this is all I can say this with certainty. In my own case, HIV has already been manageable, since I have lived so long and so well with this incurable immune disorder. I pray to live much longer, in decent health.

I realize I am lucky to be here to face these challenges ---i have to leave now to rip up and rebuild my home's front stairs before they collapse--a fitting metaphor perhaps? Or just a petty concern in the scheme of things?  -megasept 

[DanielMark]

I’ll answer this poll from my personal perspective only.

One definition of manageable is: to succeed despite difficulties or to cope.

I am doing both of those, and will continue trying to as long as I’m able. When I was diagnosed in 1988, the doc told me to go home and prepare to die within six months, and yet, here I am. No one, but no one, can predict our futures. Maybe that’s just as well.

For all those reasons I am voting yes (even tho I consider HIV a condition and not an illness).

[allopathicholistic]

Many of the drugs are fairly new to the world ... To date, not one person can state with 100% certainty what else these little pills will do to our bodies in the long run, apart from viral suppression. Too soon to tell

[AtomicA]

I voted no. But in an ideal survey I would have answered "not yet". I keep reading posts and blogs about people who have had to give up their dreams and eek out a living on some form of social assistance in order to 'manage' their illness. University was never a question for me, it was one of those unspoken expectations in my family that I would not only go on to post secondary but that I would lead a high paying, highly participatory active life. I became infected in my first year of university and the infection syndrome was so severe I had to have all my final exams deferred. The following semester when I was actually diagnosed I tried to buck up and deal for three weeks before finally withdrawing from all my courses. I spent the next six month planning, digging and planting a garden. In the time that's passed, nothing could have been more disruptive to my ability to succeed in school than the constant class interuptions to get blood drawn and what is looking like another entire lost semester due to the rough adjustment period of starting drugs. Am I managing? I guess so, I'm still passing everything and it appears to be getting better. I'm also lucky enough to have a wealthy father who understands that I can no longer work the kind of hours I use to while I was in school to support the nicer parts of life like gas, clothes and a cell phone. I can't say that many other people with HIV are that lucky. I can also say that I was so freaking lucky to be born where I was. No offense to our imperialistic superpower neighbour to the south, but something about a country that claims to have invented human rights and stands on a hollow moral leg while condemning the rest of the world as 'evildoers' strikes me as outrageously hypocritical. I really don't know how you guys manage down there, with access to competent healthcare being reserved for the select few who have the resources to pay for it (and if you have managed to accumulate those resources, there's a good chance you don't need those kinds of ongoing supports anyway). Alberta and - I think - BC are the only two places in North America  that have special clauses in their provincial health care agreements guaranteeing every single person infected with HIV will have free access to anti-retrovirals, though on my prescription form it still shows how much the province is paying. Little ol' me is costing the province a little more than $1000.00 a month just to keep my body from falling to pieces.

Moffie is right. We keep talking about how miserable a job we're doing at providing HIV treatment to developing countries, but I would ask... who is going to pay for it? the corrupt African regimes who divert more than half of their countries GDP to themselves and grossly overfunded militaries? Or how about the transnational corporations whose yearly budgets make most national economies look like a 10 year old's piggy bank? Well, without some fundamental shift in the entire world economy that takes a companies only focus off turning a profit for the sake of making a profit AT ALL COSTS or a sudden altruistic awakening in every human everywhere that's not going to happen. At last count there were 44 million people living with HIV in the world with that number expected to double in the next 50 years. If we were to provide every single one of those people with the level of care that I can receive here in Alberta - well using what I cost the government in drugs every month as a baseline that's $5.28 trillion dollars a year just in drugs for everyone living with it today - and those are the first line, less expensive drugs. That also does not take into account the cost of training and employing doctors, nurses, lab technicians or the cost of building and running clinics, treatment and testing facilities that are so desperately needed in the developing world. Sure we can start talking about generic brand drugs, but at some point someone needs to pay for it and in all honesty, when you have AIDS it's probably not going to be you. We need to take a realistic look at the situation and say HIV, in the long run, is absolutely not a 'manageable' condition, either for the individuals who have to make compromises and trade offs on their dreams and abilities to keep themselves healthy or for the sum total of the human race which is bearing this unsustainable and rapidly growing cost.
I said not yet because as much as we've stopped talking about it, the only way to make HIV truly manageable for the sustainable future is to find a cure. A complete and total cure. A cure that can be administered once or over a short interval and then never again is the only way we could ever hope to get a handle on the ceaseless spread of this totally crappy disease. The other option being to identify every single infected person on the planet and somehow completely isolate them from the ability to pass it on and wow, if that was ever possible it sure as hell isn't now.

So again, I say not yet because I  truly believe that there is a cure. As a matter of fact finding out I had HIV was what made me pick up the second degree, in biological science. I have done more research than I ever thought I was capable of and I have some pretty solid ideas. The one thing that I have learned for absolute certainty is that chemically there are very few things that cannot be undone. This disease is no different. DNA is manipulable and there is nothing magical about the ways biological systems, RNA and DNA work. The answer to HIV and every other human disease is out there, it's only our ignorance and inexperience that have prevented us from finding it. Yet.
Compromises be damned.
Manageable? Not yet, but good lord I hope it will be soon.

[Lis]

Atomic and Moffie,

BRAVO!!!!!!!!