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Author Topic: LIVING IN AMERICA - HOW DO YOU COPE?  (Read 12606 times)

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Offline leatherman

  • Member
  • Posts: 6,230
  • Google and HIV meds are Your Friends
Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #50 on: December 10, 2009, 12:14:35 AM »
You may have read that incorrectly.  Even public programs here like ADAP allow one to refill their prescriptions five days early.  Doing so consistently builds a one month contingency supply in six months.
in the 10 yrs that I lived in OH, I received meds several different ways. After coming out of the hospital two separate times, I got emergency meds through the Ryan White Fund for the first two months (each time took approx 60 before I received the meds). For several years, thereafter, I received meds covered by ADAP and state Medicaid which were automatically shipped every 30 days. I had no option to get meds any earlier than that. Then for several years I was able to pick up my meds directly from the local Rite Aid via my Medicare Part D (with a $15 co-pay). The store either could not get the price of my 30-day scripts covered before the 30 days was up and/or refused to ever give me any refills early. I was never able to get any meds earlier as you suggested.

Because most meds I have taken over the last 17 years have consistently had the side effect of making me vomit, sometimes I don't take my meds - either when I am having a very barf-y day (why bother taking them on a day I've already barfed several times just to barf up the meds?); or on days when I don't want to throw up (ie I would never take meds on a day I would going to either OH amusement park of Cedar point or Kings Island). Although I would never suggest this sort of "adherence", I have still remained over 95% compliant to my meds for nearly 6 yrs now. (as evidenced by that chart in my sig line)

However it was because I skipped those days and stored those meds away that I had the nearly THREE month supply to get through until the paperwork between OH and SC could finally get properly straightened out and processed - and that was with multiple contacts with case workers and supervisors in both states, explaining that I was on HIV meds that required strict adherence. (of course, I didn't let on that I actually had some in my possession. Could you imagine how much longer it might have taken if they didn't think I was "dying" without my meds :D)

Thankfully this SC clinic was able to provide my meds through an emergency Ryan White payment (although that took nearly 50 days) Now through my SC state Medicaid card, my meds are being mailed directly to my house. The pharmacy calls to schedule the delivery each month approx 5 days before my current monthly supply runs out. This leaves me only 1 to 2 days dosage, at most, when UPS arrives with the package containing the next monthly supply. (I would imagine as the 31-day months go by this will eventually reduce most overage I might accrue during the year) So once again, I have no option to get meds any earlier.

Since I used up all of my stockpile, I'm back to my old plan of building up a "just-in-case stash". I'm constantly telling people that I'm really not a pessimist. I really do think good things will happen tomorrow; but I don't have to do anything to plan for good things, I just have to enjoy them. However, with house fires, burglaries, deaths, and all the other things that have happened in my life, I've come to anticipate that life will throw obstacles in my way. (and wasn't I smart to think that somehow changing from one federally-funded state-administered program to another federally-funded state-administered program for some reason wouldn't go right?) So I'm not pessimistic when I stockpile meds, I'm just realistic and practical enough to plan for the worse case scenario.

Though I'm not planning on switching states again (though thinking ahead about all the possibilities, if I can't get good medical care here in SC living at my Mom's house right at the state line, I might have to move up into Charlotte NC and live with my Grandmother, so I guess it could be possible that I might change states again ::)), if anyone would like to start refilling their scripts early and send that overage to me, just in case, I'll be happy to keep those meds in my stash just in case a SC to NC switch would go screwy too. ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline buffaloboy

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  • Posts: 159
Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #51 on: December 10, 2009, 08:25:27 AM »
You may have read that incorrectly.  Even public programs here like ADAP allow one to refill their prescriptions five days early.  Doing so consistently builds a one month contingency supply in six months.

Nope. I didn't read it incorrectly.

Leatherman said:

''To hedge my bet some, I try to collect and stash away "extra meds" when ever possible.''

No one should have to 'stash away' extra medication 'just in case'. If, for whatever reason, I'd taken my last pill yesterday, I would be able to walk into an HIV clinic today and pick up some more. No paperwork, no fees to pay -  nothing.

All HIV patients should have immediate access to drugs so that running out doesn't become a life or death scenario. Plenty of people have issues around adherence anyway, without adding the extra level of stress that seems to come with the bureacratic - and sometimes costly - way of doing things in the US.

Offline dtwpuck

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  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #52 on: December 10, 2009, 08:44:47 AM »
Well I'm sincerely sorry if I have offended anyone with this post - I can honestly say that it was not my intention to.

If people get their panties in a bunch about what you post, who cares.  You have the right to say what you think, in America at least.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline bocker3

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  • Posts: 3,393
  • You gotta enjoy life......
Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #53 on: December 10, 2009, 07:57:40 PM »
Nope. I didn't read it incorrectly.

Leatherman said:

''To hedge my bet some, I try to collect and stash away "extra meds" when ever possible.''

No one should have to 'stash away' extra medication 'just in case'. If, for whatever reason, I'd taken my last pill yesterday, I would be able to walk into an HIV clinic today and pick up some more. No paperwork, no fees to pay -  nothing.

All HIV patients should have immediate access to drugs so that running out doesn't become a life or death scenario. Plenty of people have issues around adherence anyway, without adding the extra level of stress that seems to come with the bureacratic - and sometimes costly - way of doing things in the US.

Actually, even in a place like the UK it probably makes sense to "stash some drugs away".  One never knows with some sort of natural disaster or some other unforseen incident might make it impossible to "walk into an HIV clinic today and pick up some more...".  I do remember reading that getting drug refills proved quite arduous, at best, in the New Orleans area following Katrina.

Of course, I live in the US, so I keep more than a small stash -- just in case.  I have built up 9 months extra -- my mail order pharmacy allows me to order my 3 month supply every 2 months!

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Nestor

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  • Posts: 430
  • What we love, we shall grow to resemble.
Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #54 on: December 10, 2009, 10:01:14 PM »
Here is another long-winded post:

I thank Bocker and Leathermanfor the attention which they gave to my writing, and for thought-provoking and stimulating comments, but I am a little embarrassed for not knowing quite how to reply.  A full vindication of my choices is not called for and would require far more details about my personal history than I care to share with a forum full of strangers.  When I wrote what I did above, I thought only to supply the original poster with some anecdotal responses to his question.  I tried to sketch briefly what it was like to be young and uninsured, to be 36 and have ADAP, and, tragically, what it was like for my mother to have health insurance but then get cancer and discover how very inadequate that health insurance turned out to be.  I think that Bocker read some of the indignation which I expressed on the last subject as if it were a comment on the first.  He writes:

Quote
So, let me get this straight -- you didn't want to pay for health care because you weren't willing to sacrifice your "few pleasures".

Yet, it is obscene for the government to not make different choices and allow enough money to pay for health care?

Or -- to paraphrase -- you did not want to pay for your health care by giving up other things, but everyone else should pay for your health care by giving up other things.  I mean, our system is not a good one, but it's what we have today -- so it seems a bit ironic that you take "the government" to task for not being willing to do what you, yourself, admit to having been unwilling to do.

Bocker, thank you for thinking about what I wrote and giving a thought-provoking reply, but I am a little bit amazed that anyone can have read what I wrote and taken out of it what you seem to have taken. 

First, you isolate the two words "few pleasures" which I "wasn't willing to sacrifice" in a way that implies that I was somehow frivolous or careless, and that it was for the sake of a regular supply of Armani suits, or boxes at the opera, that I chose not to have health insurance.  Possibly you missed the part where I said:

Quote
The fact is that I was already living very humbly and spending that extra several hundred dollars a month would really have pushed me over the limit into poverty. 

Possibly you read it but didn't want to let reality get in the way of a good, satisfying bit of umbrage.  Possibly you think I was merely being melodramatic.  Or, perhaps you simply have no idea what it is like to be only a few small steps above poverty and to be terrified of falling into the abyss.  Possibly you gave the matter no thought at all.

Here is the reality.  At the time of which I speak I was working very hard: eight hours, every day, of energy-demanding classroom teaching.  Two hours of the subway at rush hour.  All ten hours on my feet.  Enough of a lunch break--not included in the eight hours I mention above--to inhale something without tasting it.  Two years in a classroom without a window so that, during the winter months, I barely saw the sun Monday to Friday.  That was my life--or the work side of it at any rate--as it was and is life for thousands of other young New Yorkers then and now.  For this work I made enough money to have a decent but very simple life.  One room an hour away from work, kitchen and bathroom shared with someone else.  Calculating my budget very carefully every month to make rent.  Saving in advance to buy Christmas presents.  One vacation in four years. 

Out of the decent but small pay which I received for my work, a surprisingly great deal was taken out in taxes: federal tax, state tax, city tax, social security.  There were also student loans to repay. 

When I think of the sort of life I would have been left with if I had actually been stupid enough to pay three hundred or more dollars a month for health insurance which I did not need, the only thing that amazes me is that I ever considered it at all.  I was neither a great saint living entirely for the spirit nor an artist, in love with his work, happily consigning his youth to poverty so that he can produce his masterpiece.  I was doing work I liked, but on the evenings and weekends I wanted to have some sort of life.  The life I would have led had I been as really, crushingly poor as paying for health insurance would have made me, would, in a dark irony, have made health insurance necessary indeed by rendering me permanently and insuperably depressed. 

You say:

Quote
You did not want to pay for health care...

There are two serious errors in those few words. 

First, the thing for which I "did not want" to pay was not health care but health insurance.  There is a huge difference.  Health care is something one actually gets; health insurance is paying now for some potentially necessary health care in the future.  As for actual health care, on the one and only one occasion, in the past twenty years--and that includes the five years with HIV--when I have really needed medical attention I willingly paid for it out of my own pocket.  I was not thrilled with the idea of a doctor visit lasting less than three minutes costing a hundred dollars, but I paid it. 

Your second mistake is in the "you did not want to pay".  On the contrary, I would have been very happy to buy health insurance at anything approaching a reasonable price.  I would even have been willing to pay a slightly unreasonable price.  What I 'did not want' to pay--what I, practically speaking, could not pay, given my circumstances--was the wildly, extravagantly unreasonable price at which health insurance was in fact offered to me. 

You seem to believe that, unwilling (because the phantom me which you have constructed preferred to keep himself in Armani suits) to pay anything for my own health care, I then chose indignantly to demand health care from his government as a right.  That is the only sense which I can derive from the very strange turn which you take next: 

Quote
Yet, it is obscene for the government to not make different choices and allow enough money to pay for health care?

Or -- to paraphrase -- you did not want to pay for your health care by giving up other things, but everyone else should pay for your health care by giving up other things.  I mean, our system is not a good one, but it's what we have today -- so it seems a bit ironic that you take "the government" to task for not being willing to do what you, yourself, admit to having been unwilling to do.

I'm puzzled by the bit about how "everyone else should pay for my health care by giving up other things".  First, there was no 'my health care' as I wasn't receiving any and didn't want any.  And who are the "everyone else"?  I suppose you are referring to the money of the tax payers.  Has it occurred to you that I am one of the tax-payers too, and that I have been reminded of that fact, by the not insignificant gap between what I earned and what I got, on every paycheck these past fifteen years? 

The money, in other words, with regard to which I made my rational choices was my own, or what was left of it after tax.  The money which which our government financed the Clinton impreachment and the Iraq war was not its own but ours too--we have paid it. 

Finally, my choices--even if, as you are welcome to do, you regard them as mistakes, were hardly obscene.  Many of our government's choices are indisputably obscene.  Why should I not say so?

But beyond all these quibbles, do you really want to try to draw a comparison between a single individual living on the border of poverty and the government of one of the richest and most powerful countries on earth?  Really?  When, after rent, I have 200 dollars left over for food, my unwillingness not to be reduced to 40 dollars for food really resembles, in your eyes, a government's unwillingness to take a few million dollars from the billions that go on every kind of waste so as not to let the uninsured die without care?  A borderline poor man's unwillingness to sink into total poverty really resembles a government's addiction to wasteful beaurocratic spending?  Are you serious? 

Finally, you quoted my use of the word "obscene" in a way that made it sound as if I had been wantonly demanding free and sophisticated health care for everybody.  On the contrary, in the paragraph which preceded my use of that word, I went very far towards saying that I saw neither a historical nor a philosophical justification for saying that health care was a right.  I myself, having chosen not to pay for health insurance, never expected to be given any free health care, and I saw no problem with that. 

I went on to say that while a government is paying for the frivolous things that ours obviously can, and while a whole society is worm-eaten with luxury and waste, it was obscene not to provide some level of health care.  I didn't say free sleeping pills for everyone.  I didn't say that I should have my every sniffle coddled at public expense.  I meant that someone who is poor and has cancer should not be made to wait until she is already half-dead before they begin to agree to treat her.  I did not expect to be attacked for that. 

 Leatherman writes:

Quote
"Since I didn't anticipate any health problems, I think I was being reasonable in not having insurance.  In those years I met many people who, either through self-righteousness or sheer gloom, delighted in telling me that one day I would be sorry."

Though I might agree with your sentiment if we were discussing car insurance (a blatant rip-off that forces good drivers to pay for the mistakes of bad drivers who are allowed to continue being bad drivers), however nearly 100% of humans have health issues/problems at some point, so your logic was definitely not right there.

Actually, I think my logic, at 25, was quite right, and I also think that health insurance has more in common with car insurance, as you describe it, than would at first appear. 

1. While it may be true that nearly all of us have health issues at some point, the severity and frequency of those issues varies dramatically from one person to another.  I was being quite correct, as it turns out, in guessing that I wouldn't be needing much medical attention any time soon: ten years later, and five years into HIV, I can still say that I haven't missed a day of work or school--for health reasons--since Junior High. 

2.  It was not a case of blithely declaring health insurance to be unnecessary, but rather of recognizing my uninsured state to be the lesser of two evils.  I hated discussing my private circumstances above, but I needed to show--since, contrary to my expectations, my previous post was taken as an invitation to pass judgement on my personal choices--that the poverty which health insurance would have inflicted would have hurt me far more, and far sooner, than lack of medical attention would have done. 

 3.  I also knew that my situation--and therefore any health insurance I might have gotten--was not going to last twenty years anyway.  I might lose my job; I might leave the country; I might go back to school.  In fact, all three of those things happened or came close to happening, and any health insurance that I had paid for in those years would have gone utterly unused anyway.  In other words, in considering whether to pay for health insurance, it was not my old age that I needed to think about by only my near future, and with regard to that I believe I chose rightly. 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline Nestor

  • Member
  • Posts: 430
  • What we love, we shall grow to resemble.
Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #55 on: December 10, 2009, 10:13:39 PM »
Assurbanipal,

Thank you for your comments on Mr. Murdock's articles; they were exactly the sort of thing I was hoping for when I posted them.  Obviously, neither his articles nor those of Mr. Kristof are purely opinion; as selectively chosen as the facts which each put forward may have been, they remain facts, and I chose those articles precisely because they contain so many facts, rather than pure rhetoric.  However, statistics are indeed very slippery things, and I am glad that you have managed to shed some light on the truth behind his. 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline buffaloboy

  • Member
  • Posts: 159
Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #56 on: December 11, 2009, 03:30:07 PM »
Actually, even in a place like the UK it probably makes sense to "stash some drugs away".  One never knows with some sort of natural disaster or some other unforseen incident might make it impossible to "walk into an HIV clinic today and pick up some more...".  I do remember reading that getting drug refills proved quite arduous, at best, in the New Orleans area following Katrina.

Of course, I live in the US, so I keep more than a small stash -- just in case.  I have built up 9 months extra -- my mail order pharmacy allows me to order my 3 month supply every 2 months!

Mike

A natural disaster would strain the healthcare provision anywhere it occured. But the point here is that, acts of God notwithstanding, it's simply not necessary to to build up a back-up supply here in the UK because replacement medication is easy to get hold of as a rule. This does not appear to be the case for everybody in America.

Offline megasept

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  • Posts: 478
  • Steven here...
Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #57 on: December 11, 2009, 04:05:24 PM »
It has been my experience that the people who have the hardest time with healthcare expenses are the people who are self-employed with preexisting medical conditions. My younger brother is in that situation. He can't afford health insurance and relies on his ex-wife, who is a physician's assistant for minor medical care. If he has a major medical problem he is screwed.

How ironic that sick people can't get healthcare, or that healthcare EMPLOYEES can't afford to be protected from major illness.

I have heard Brits dis the NHS until an outsider does the same, then you guys all "rally around the flag."  ;)

Well, I am in that "self-employed self-insured" category. My medical expenses (without dental) routinely top $18,000 annually. I have had my insurance premiums raised 6 times (coming 1-1-10) for a total of %117 in increases over 36 months. My insurer also interfered three times just this year with my ongoing med treatments! Then the "penny-pinchers" reversed themselves all 3 times. Paying for meds is not my big problem because the drug plan included with my insurance keeps my med costs to about 15% of my overall expenses---as it should, I have INSURANCE. My premium was $966 monthly. Now it's $300 less monthly, but with a few thousand more in deductibles ($4000?). I am screwed one way or another. I have concluded nearly any government plan that includes me will cost me less and ration my care no more than what I currently experience.

I would very much like to be offered to buy into Medicare at 55 years of age, two years from now, which is the announced trade off for dumping/gutting the Public Option in Senate negotiations. Now, why can't everyone have the same deal or better, cradle to grave? Healthcare costs are the primary force destroying our auto industry. Small business are in a terrible bind, and yet they will be exempted from current reform plans.

A few months ago this Administration (which I helped elect) made a big deal with the pharmaceutical industry in return for not importing cheaper equivalent drugs from Canada. The payback? 9% drug price increases in less than half a year.

I doubt I know anyone without a "preexisting medical condition". If you stay covered (no gaps), you can stay or get insurance and treatment for "old" conditions under HIPPA protections. My own insurance (same insurer) is now a "new" plan, "guaranteed issuance", meaning they can't dump me. 3 plans are available to me. 15 or more AREN'T! Confused? Here I explain it:
http://www.fixourhealthcare.ca.gov/index.php/story/videos/13684/

This country is NOT (currently) "brutally repressive" Lord B ---there's no need.[/i] We are exploited, lied to, and mistreated by numbers-counters; I blame corporate business more than government. And I blame many citizens who get all their news from TV and blab and blab without lifting a finger socially (We don't have to agree on what should be done).

Our elected representatives get legally paid off by the pharmaceutical and insurance interests. Americans are decent people, only with a dose of ADD and very short (political) memories. Sometimes we act like suckers. Other times we show wisdom and courage.

I am actually amazed by how many of us here accept so much of the "status quo", we who are collectively experienced healthcare consumers. I just have to shrug my shoulders some days. My 2Ę. ;)

Most lobbying only requires email or a phone; I am active (daily, last 4 months) fighting for these goals: universal health coverage, quality care for all, premium/cost containment, preventive healthcare. I do not expect to see these goals achieved thru the existing monopoly "private" insurance system. So I've been working with hundreds of thousands of others for Single Payer and/or Public Option. Medicare is Single Payer, actually. If anyone wants to join me (share suggestions, links, organizations, meet at an activity) in this struggle for healthcare reform, just PM me.

Be part of the solution, while we still have a chance to influence the future.

-Steven (aka  8) megasept)

« Last Edit: December 11, 2009, 04:49:03 PM by megasept »

Offline leese43

  • Member
  • Posts: 257
Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #58 on: December 11, 2009, 05:22:33 PM »

I have heard Brits dis the NHS until an outsider does the same, then you guys all "rally around the flag."  ;)

Yes this is triue, I don't think anyone would deny there is room for improvement when it comes to the length of time we may sometimes have to wait for "non-urgent" appointments... but that's really not the point here and i've never heard a Brit say that they'd give up the NHS in favour of private health care.

Defending our country is a little like defending our family.. WE can say what we like but an outsider better not try... don't think this is unique to the Brits tho ;)

Oct 04 - Neg
Aug 05 - infected
Oct 05 - cd4 780, vl 60k
Apr 08 - cd4 430, vl 243
Jul 08 - cd4 550, vl 896
Nov 08 - cd4 730, vl 1.8k
May 09 - cd4 590, vl 1.5k
Sep 09 - cd4 460 vl 34k
Dec 09 - cd4 470 vl 42k
April 10 - cd4 430 vl 88.5k
July 10 - cd4 330 vl 118k
Aug 10 - started reyataz/truvada/norvir
Aug 10 - cd4 380 vl 4k (12 days after starting meds :))
Sep 10 - cd4 520 vl 1.5k
Oct 10 - cd4 590 vl 44
Jan 11 -cd4 610 vl <40 cd4% 50
May 11 - cd4 780 vl UD

Offline MarkB

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  • Posts: 292
Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #59 on: December 11, 2009, 09:51:01 PM »
As someone who lives in the UK I would have to say that there is much that is right with the NHS and much that is wrong with it. But on the plus side, when I was diagnosed, all the labs and all the support was just simply there: no questions asked, no charge made. And when the time came to go on meds, the pharmacist said "would you like one month's or three months' supply?" It cost me nothing, beyond travelling to the hospital. Here, we are more than lucky. And in the future, it may not always be like this.

Offline Inchlingblue

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #60 on: December 11, 2009, 10:26:36 PM »
And in the future, it may not always be like this.

Why do you say this?

Offline Ann

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #61 on: December 12, 2009, 08:00:41 AM »

And in the future, it may not always be like this.



Why do you say this?


Because there are some in government who would love to privatise healthcare here so we can have a mess just like in the States.

Also, with the recession we're all currently experiencing, there are cutbacks being made. There may come a day when we have to pay a small prescription charge for our meds, but I can't see it being enough to break the bank. Most people already pay a small prescription charge, but certain groups are exempt, like children, OAPs, PLWA, and those on disability or unemployment.


I have heard Brits dis the NHS until an outsider does the same, then you guys all "rally around the flag."  ;)


Whenever I hear a Brit dissing the NHS, I tell them about my experiences under the American system and about some of the things I've read here, to let them know just how lucky they are to have the NHS. The NHS might not be perfect, but it's a damn-sight better than many of the alternatives.

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Miss Philicia

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #62 on: December 12, 2009, 09:06:07 AM »

Also, with the recession we're all currently experiencing, there are cutbacks being made. There may come a day when we have to pay a small prescription charge for our meds, but I can't see it being enough to break the bank.

If they UK keeps going down the road and its indebtedness gets as high as Greece's currently is, you know those Tories will be doing this.  Actually they'll probably do it anyway if they get a clear majority in your upcoming elections.
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Offline buffaloboy

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #63 on: December 12, 2009, 10:02:28 AM »
Because there are some in government who would love to privatise healthcare here so we can have a mess just like in the States.

Also, with the recession we're all currently experiencing, there are cutbacks being made. There may come a day when we have to pay a small prescription charge for our meds, but I can't see it being enough to break the bank. Most people already pay a small prescription charge, but certain groups are exempt, like children, OAPs, PLWA, and those on disability or unemployment.

Whenever I hear a Brit dissing the NHS, I tell them about my experiences under the American system and about some of the things I've read here, to let them know just how lucky they are to have the NHS. The NHS might not be perfect, but it's a damn-sight better than many of the alternatives.

Ann

There isn't any doubt that due to the recession and the high levels of government that there will be swingeing cuts in all government departartments in the years ahead. But my gut instinct tells me that frontline NHS provision will not change too dramatically, as this would not play well with the electorate.  

I also believe that free prescriptions for PLWA will continue since  the fact is, poorer people are disproportinately affected by HIV and some simply wouldn't be able to pay even nominal amounts for treatment (remember that positive people are often not just taking medication to treat their HIV but also for side effects, or for things like depression, low testosterone  etc which sometimes go hand in hand with HIV).

Given that studies suggest that people with untreated HIV are more infectious than those on drugs, any government who makes  access to medication more complex and costly, could well find themselves with a media backlash on their hands by effectively 'allowing the deadly disease to spread unchecked', which is how it would be reported in the tabloids.
« Last Edit: December 12, 2009, 10:04:14 AM by buffaloboy »

Offline buffaloboy

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #64 on: December 12, 2009, 10:12:17 AM »
If they UK keeps going down the road and its indebtedness gets as high as Greece's currently is, you know those Tories will be doing this.  Actually they'll probably do it anyway if they get a clear majority in your upcoming elections.

I actually don't believe this will happen for the reasons I've stated above. There would be poor(er) patients indefinitely postponing starting treatment due to the cost which completely goes against the medical establishment's approach of getting people onto HIV drugs at the optimal time.

Offline Ann

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #65 on: December 12, 2009, 10:14:24 AM »

I also believe that free prescriptions for PLWA will continue since  the fact is, poorer people are disproportinately affected by HIV and some simply wouldn't be able to pay even nominal amounts for treatment (remember that positive people are often not just taking medication to treat their HIV but also for side effects, or for things like depression, low testosterone  etc which sometimes go hand in hand with HIV).

Given that studies suggest that people with untreated HIV are more infectious than those on drugs, any government who makes  access to medication more complex and costly, could well find themselves with a media backlash on their hands by effectively 'allowing the deadly disease to spread unchecked', which is how it would be reported in the tabloids.


I basically agree with you, with one small difference. I think PLWA who are in gainful employment may be the ones who end up with prescription charges. And let's face it, many PLWA are in gainful employment these days. I don't envision them being high charges, but charges nonetheless. PLWA who are on incapacity, DLA, SI, or unemployment would still receive them free of charge, just like any other person on one or more of these programs who receive any type of meds.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline buffaloboy

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #66 on: December 12, 2009, 10:39:21 AM »
I basically agree with you, with one small difference. I think PLWA who are in gainful employment may be the ones who end up with prescription charges. And let's face it, many PLWA are in gainful employment these days. I don't envision them being high charges, but charges nonetheless. PLWA who are on incapacity, DLA, SI, or unemployment would still receive them free of charge, just like any other person on one or more of these programs who receive any type of meds.

I think there is quite a strong political aspect to HIV which doesn't really apply to other diseases due to its ongoing and infectious nature and a sense that it needs to be 'contained', so from a PR perspective it could be disastrous to implement charges.

The trouble with means-testing prescriptions is that those people who are just above the level where they are eligible for free medicines could quite easily slip through the HIV treatment net. This is a situation that neither doctors nor any government would feel too comfortable with as far as HIV is concerned, since it's a disease the public fears like no other.

Offline Inchlingblue

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #67 on: December 12, 2009, 10:51:46 AM »
Buffaloboy: At least in the US there have been backlashes from individuals who have other diseases such as cancer, lupus. rheumatoid arthritis, etc etc., in which there is a perception that people with HIV get "special treatment." Here in the US I know there are some that resent ADAP giving out HIV drugs when they don't get free drugs for whatever disease it is they suffer from.

There is also a recent backlash against funding HIV treatment even in the developing world, arguing that funds should be redirected away from HIV because things such as diarrhea kill more children than HIV does (which I guess it does at least in the short term).

I'm just saying, it's not that straightforward politically.

As the Obama administration slowly unveils its global AIDS plan, the drive to put more people on drugs is being scaled back as emphasis is shifted to prevention and to diseases that cost less to fight, including pneumonia, diarrhea, malaria and fatal birth complications.

 
LINK:

http://www.nytimes.com/2009/12/09/health/policy/09aids.html

« Last Edit: December 12, 2009, 11:25:40 AM by Inchlingblue »

Offline leatherman

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #68 on: December 12, 2009, 11:09:38 AM »
I also believe that free prescriptions for PLWA will continue since the fact is, poorer people are disproportinately affected by HIV and some simply wouldn't be able to pay even nominal amounts for treatment
ah, be careful. you never can tell what will happen though when changes are made. ;)

When the Part D prescription change was put into our Medicare system a few years back, I went from paying $0 for my prescriptions to paying $15 of co-pays each month. It wasn't enough to "break the bank" as Ann put it; but it did work out to being about 2% of my monthly disability check that I had been spending on food and utility payments.
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Offline denb45

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #69 on: December 12, 2009, 11:50:31 AM »
ah, be careful. you never can tell what will happen though when changes are made. ;)

When the Part D prescription change was put into our Medicare system a few years back, I went from paying $0 for my prescriptions to paying $15 of co-pays each month. It wasn't enough to "break the bank" as Ann put it; but it did work out to being about 2% of my monthly disability check that I had been spending on food and utility payments.

I hated Medicare part D, I ended up paying for HARRT-Meds when they used to be for free thur my States ADAP-Program, so, now after 3 yrs of Part D and losing my Medicaid-QMB (the part that pays for the medicare premiums) I'm back to square-one, due to NOT being able to afford the part D anymore  :-\
so, yeah be VERY CAREFUL WHAT YOU WISH FOR.................it could very well be something that you'll no longer be able to afford ???
« Last Edit: December 12, 2009, 11:55:03 AM by denb45 »
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Offline Ann

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #70 on: December 12, 2009, 11:57:20 AM »
I think there is quite a strong political aspect to HIV which doesn't really apply to other diseases due to its ongoing and infectious nature and a sense that it needs to be 'contained', so from a PR perspective it could be disastrous to implement charges.

The trouble with means-testing prescriptions is that those people who are just above the level where they are eligible for free medicines could quite easily slip through the HIV treatment net. This is a situation that neither doctors nor any government would feel too comfortable with as far as HIV is concerned, since it's a disease the public fears like no other.

You've got a point there. However, what happened to me might end up happening to other PLWA. I live in the Isle of Man (aka The Rock) but I receive my hiv care in Liverpool. Up until the government started dispersing asylum seekers to cities outside London, attendance at my hiv clinic was about a quarter to a third of what it is now. (I don't have actual numbers, that's just my observation) This in turn created a budget squeeze in the Liverpool NHS Trust. To do my bit towards alleviating this budget squeeze, I was asked to go to my local GP here on the Rock for any meds that weren't ARVs. The meds I take I wouldn't be taking if I weren't poz, but they are not ARVs, and I used to get them from the pharmacy at the Liverpool Royal. As it is, I still get these meds free but if I were not in one of the otherwise exempted groups, I'd be paying a fiver per script.

So what I'm saying is that there may come a day when the meds used to cope with side-effects, OI prevention, etc that come with having hiv would be subject to prescription charges, while the ARVs were not. (aside from people in the other exempt groups I already listed) Do you see where I'm coming from? Because I do agree with your points about the public wanting to see us treated and therefore less infectious. But the meds I take for hiv-related dire-rear do not treat the hiv and make me less infectious. They just make me less explosive. :D


Buffaloboy: At least in the US there have been backlashes from individuals who have other diseases such as cancer, lupus. rheumatoid arthritis, etc etc., in which there is a perception that people with HIV get "special treatment." Here in the US I know there are some that resent ADAP giving out HIV drugs when they don't get free drugs for whatever disease it is they suffer from.


But the point is that hiv is infectious and those illnesses you list are not. To treat someone with cancer will not prevent others from getting cancer; however, to treat hiv is also to prevent hiv. That's the point Buffaloboy was making, one that makes a lot of sense politically here in the UK.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Inchlingblue

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #71 on: December 12, 2009, 12:18:52 PM »

But the point is that hiv is infectious and those illnesses you list are not. To treat someone with cancer will not prevent others from getting cancer; however, to treat hiv is also to prevent hiv. That's the point Buffaloboy was making, one that makes a lot of sense politically here in the UK.

Ann

I know the difference between the diseases. ;)  I'm not saying I agree with the sentiments. I am saying there exists that sentiment among some of those suffering from other diseases. And this can translate into political capital especially in some of the "Red" states. There is a lack of interest  in HIV among the general public and among some politicians since it's become a more manageable disease and hence, less visible. People seem to forget that if left untreated the pandemic could get much worse.

As already mentioned, even some experts are recommending redirecting funds away from HIV to other diseases in Africa, this despite the fact that HIV is infectious/communicable.

In the UK, everyone is covered, here someone with cancer who can't get meds for free will make an argument that those with HIV should not get meds for free either. This system breeds that kind of resentful sentiment because of the inherent inequality and lack of access.

If these sentiments take hold, it's not an automatic "given" that HIV will continue to be funded the way it is (not that it's funded that great now anyway). There was a recent article, I can find it an link it, saying how many more research dollars are spent on HIV than on other diseases and how some people think that should change.

Buffaloboy (and maybe you as well, Ann?) is operating on a premise  that HIV will continue to be seen the way it has been all these years and receive "special treatment" because it is an infectious disease, but that's not necessarily a given if enough ignorant people put up enough of an opposition especially in the US where access to health care is so inequitable. The topic of this post is about the limitations of the health care system in the US and this is one area of concern.

If in the UK there was a similar situation in which those with HIV had free access to meds, even in a limited way, and those with other diseases did not, it's likely the same resentments would arise.  
« Last Edit: December 12, 2009, 10:59:09 PM by Inchlingblue »

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #72 on: December 12, 2009, 12:46:14 PM »
 oh, those dreaded asylum seekers. they get everywhere

   
. Up until the government started dispersing asylum seekers to cities outside London, attendance at my hiv clinic was about a quarter to a third of what it is now. (I don't have actual numbers, that's just my observation) This in turn created a budget squeeze in the Liverpool NHS Trust.

  for a minute I thought I was reading the Daily mail or the Daily express, Ann
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Offline buffaloboy

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #73 on: December 12, 2009, 01:04:20 PM »
Ann:

Yes, I do see your point. In fact there has for some time there been an emphasis on encouraging people away from HIV clinics and towards their GP, even though many conditions are HIV related, and GPs will often end up sending patients back to their clinic.

I wouldn't be too surprised if there were also cutbacks in things like HIV psychologists and dieticians, or the free access to cosmetic procedures like NewFill for people with lipoatrophy; these are things which can be fairly easily argued are 'non-essential'.

Inchlingblue:

I think the political climate is different here in the UK compared to the US. Yes, people's attitudes can, and do, change, but there isn't really a sense here that people with HIV are being treated preferentially, and I can't see that changing anytime soon.

The other thing to remember is that the number of people living with HIV in the UK is relatively low -  83,000 at year's end in 2008. Not all of these people will be on treatment, so the actual amount that could be raised, or saved, by introducing prescription charges would be negligible. In any case, most HIV charities, doctors, and even political parties could well argue that our infection rate is low precisely because treatment has remained free and easily accessible to all who need it.

Offline Carly

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #74 on: December 14, 2009, 08:50:40 PM »
Well, as I've stated in my previous posts, we're fucked as far as insurance goes right now.  My boyfriend has insurance through the university he attends, & it only pays $250 a year for prescriptions.  That doesn't exactly cover the $1700 a month cost of Atripla. 

And I don't think it's the healthcare per se in the U.S. that needs to be reformed.  It's the lack of access to affordable healthcare that we don't have.  We've got state of the art medical treatments here in the U.S., but only the very rich or very well insured have access to them.  The rest of us just have to grovel at the insurance companys' feet for everything from birth control pills to life saving treatments.  And they have their fingers in everybody's pies, so I honestly don't see how any decent healthcare bill is going to get passed.  First they have the public option, then they don't, then they have some nonsense where everyone gets medicare, then something else.  The republicans are basically big brutes who bully their way into getting what they want, & the democrats are spineless wimps who bend under the smallest amount of pressure.  It's a no win situation.

We've already decided that if my b/f isn't able to get a job with decent insurance when he graduates, then we're just going to move to Canada or the U.K.  Fuck it.

Offline Ann

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #75 on: December 14, 2009, 09:26:41 PM »
oh, those dreaded asylum seekers. they get everywhere

   
  for a minute I thought I was reading the Daily mail or the Daily express, Ann

Sam, I don't know how I missed this post the other day. I don't understand how you could have spent any time on this forum and then try to imply that I'm some sort of tabloid-trash reading, right-wing nutjob. I'm not. I'm usually accused of being a bleeding-heart socialist liberal. And damn proud of it too. I've got absolutely nothing against asylum seekers. However, the simple fact of the matter is that the clinic I attend has seen a big increase in hiv patients, not because home-grown hiv infections are necessarily on the rise, but because we have more asylum seekers attending our clinic. I'm glad they're there - they're getting good care, they damn-well deserve that good care and that makes me happy. So stick your Daily Mail comments where the sun don't shine, sunshine. ::)

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Miss Philicia

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #76 on: December 14, 2009, 09:55:51 PM »
I'm some sort of tabloid-trash reading, RACIST right-wing nutjob.

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Offline sam66

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #77 on: December 15, 2009, 10:06:15 AM »
 hi ya Ann
                  Actually Ann, I do agree with you.

Sam,. I'm glad they're there - they're getting good care, they damn-well deserve that good care and that makes me happy. So stick your Daily Mail comments where the sun don't shine, sunshine. ::)

Ann

           In my opinion too, there are a lot of HIV positive people who come from these so called third world countries also Eastern European countries as asylum seekers to the UK, but I think they claim asylum just to get treatment for HIV.

                                  I'm sure none of us can blame anyone for fighting for their life, and doing what ever they have to do to stay alive, Us +ve's probably understand that than anybody else.

                                I hope our rulers can find a way to provide more care to people in their own countries, so they can get the care they need in their own country.

                         I also think this reflects on our society, on the whole we are a tolerant, caring society when it comes down to it.

              peace and love Ann  ;)
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Offline blondbeauty

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #78 on: December 18, 2009, 08:43:01 PM »
The purpose of living in society is to help each other. I am sometimes scared about the big number of inmigrants that come to Spain to get medical care. These type of inmigration comes from all parts of the world.
In areas of the coast as Valencia the NHS has a "hole" of 800 million euros because on this type of inmigration that is mainly from Europe (eldery people retired in Spain). But they are still giving an excellent medical service.
I met a young man from Holland that came to Madrid to get a Kidney tranplant. In Holland the waiting list was 4 years. In Madrid, in one year, he had his new kydney and he is doing great.
As I said before, this scares me, because it makes me ask myself for how is our NHS going to be able to resist. But solidarity must be in the first place.
Even though we are suffering a deep crisis, I am getting two months supply if meds every time. After proving to them that I am responsible and following my treatment with total adherence, they trust me enough to do so. I remember myself complaining about burocracy of the NHS a few years ago. Now I realize they are doing a great job and I understand how desperate some people are to leave their countries and families to seek good medical care.
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