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Author Topic: LIVING IN AMERICA - HOW DO YOU COPE?  (Read 12474 times)

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Offline UK_SL

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LIVING IN AMERICA - HOW DO YOU COPE?
« on: December 05, 2009, 01:26:13 AM »
How do you cope in the US with the financial burdon of HIV - I was looking on some sites and never realised the meds were so expensive and I imagine it must be hard to get insurance?

I am lucky enough to live in the UK and have all my meds / treatments paid by the NHS, when I hear people moaning in this country about the state of the health service it makes me so mad - I say to them "You don't know how lucky we are, at least we have a health service!!". In my experience I've had the best care you could get from my clinic.

Just needed to say that I admire you yanks for not only coping with the disease but the financial burdon too.
05/10/2009 ~ DIAGNOSED, CD4 = 8
22/10/2009 ~ CD4 = 11/VL = 430,000, STARTED ATRIPLA and SEPTRIN
26/11/2009 ~ CD4 = 121/VL = 840
22/12/2009 ~ CD4 = 184 (6%)/VL = 340
11/03/2010 ~ CD4 = 177 (12%)/VL = 72
01/07/2010 ~ CD4 = 247 (12%) VL = 76
20/01/2011 ~ CD4 = 350 / VL = 29

Offline Moffie65

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #1 on: December 05, 2009, 10:22:50 AM »
For those of us who are unable to pay, there is always the Ryan White Act, which was passed by congress in the early '90's, which covers our HIV medications, also there are those of us who are covered by the Veterans Administration fully for all our HIV care.  Those that have to find insurance through their employers are usually the ones that are stuck with the largest amount of out of pocket expenses with their medications, as most have large co-pays.

Other than that, we exercise a whole lot of faith that we all can somehow make it through.  Basicly our health care system in the United States is falling rapidly into complete failure for the working class.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Inchlingblue

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #2 on: December 05, 2009, 10:36:45 AM »
The situation here is very bad. There are currently, last I checked, 300 people on ADAP waiting lists. Eligibility requirements are getting stricter. People are losing their jobs and their health insurance. And as great as ADAP has been through the years, supplying life-saving medications to those who have HIV, it is not comprehensive health insurance. If someone on ADAP needs to go to the hospital, etc., ADAP does not cover that.

And if it weren't for these "Blue Dog Democrats," we'd at least have a chance at meaningful health reform. One of them Mary Landrieu from Louisiana was essentially bribed with $100 million to $300 million for her state's Medicaid if she agreed not to hold back the health care bill from going to debate! That doesn't mean she will vote for health care reform, she is simply agreeing not to stop it from going to debate, thank you very much. Can she not put 2 and 2 together and realize that the very legislation that she is obstructing is what will save the people of her state?

It adds a whole layer of stress and worry for anyone who has any sort of health condition, not just HIV. If you are either rich or very poor you can get coverage but if you are in the middle, it's scary.

To quote an Elton John song, "It's a sad sad situation, and it's getting more and more absurd."

Below is a recent article about ADAP in Utah, just one example of many:

Utah: Doctors, Patients Reeling From AIDS Medication Funding Shortfall

LINK:

http://www.thebody.com/content/news/art54707.html
« Last Edit: December 05, 2009, 11:42:35 AM by Inchlingblue »

Offline LordBerners

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #3 on: December 05, 2009, 10:51:25 AM »
UK SL, you have to remember that most Americans are used to living in a brutally repressive society, so they're at least conditioned to accept this sort of thing. 

When you tell the average American how things are for working class people in Europe, he really can't believe it.  The reactions range from 'how is that possible?' to 'why would They give you that?', but in any case nobody can believe happiness and well being for most is actually achievable in this life.  The next, of course.  They believe that.
Please, just call me Berners.. or Baron.

Offline sam66

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #4 on: December 05, 2009, 10:54:47 AM »


                              Thank God for the NHS
                               God save the NHS
december 2007 diagnosed +ve ,

Offline leatherman

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #5 on: December 05, 2009, 11:05:13 AM »
we exercise a whole lot of faith that we all can somehow make it through.
getting my meds (and health care) through a mixture of state medicaid, ADAP, Ryan White, and federal medicare, not only do I worry about having HIV, worrying about adhering to my med regimen; but there's always a fear that I'll lose a piece of that assistance, lose my meds, and become ill - much less risk death from untreated HIV. In the nearly 20 that I've had AIDS, I've gone off meds several times (for various reasons) and seen first hand that within 6-9 months, I can be sick enough to have an OI and be hospitalized.

For the last decade, I have been on Social Security disability and still falling enough below the poverty level that currently the cost of all my meds is covered by those agencies without any copay. It's an uneasy balancing act and should any piece get pulled out from under me, Jingo! I could find my life crumbling down like a tower of blocks. To hedge my bet some, I try to collect and stash away "extra meds" when ever possible. An extra month or two could be the difference between developing resistance issues or even life and death.

If you are either rich or very poor you can get coverage but if you are in the middle, it's scary.
being poor is no guarantee either

Recently I moved from SC to OH and though I believed I had nearly every document needed to make the transition easy from state-administered federal program to state-administered federal program, one piece of paperwork from OH held up the transfer for 3 months (the situation still is not 100% resolved today, though I am working hard and hoping to have it all cleared up by Christmas. It's not always easy to get gov't employees to work faster when to them it's just a M-F 9-5 job. It doesn't mean life-n-death to them like it does to me). If I had not stashed meds while in OH and brought down nearly 3 months worth of "extra meds" I would have just gone 3 months with no medications at all waiting for this paperwork issue to be resolved. As it was, I was down to the last 3 days worth of my meds (and now my "stockpile" is gone!), when a case worker was finally able to arrange an "emergency" month's worth until I finally got my SC state medicaid case approved.

So it takes a lot of faith and trust that my gov't is going to assist me PLUS some very careful planning (ie skipping meds occassionally to hoard up a supply) to keep illness and possibly even the Grim Reaper at bay. That's how it's been the last 20 yrs of my life, and with some luck and barring any dramatic change, that's how precarious the next 20 yrs of my life will be also.
leatherman (aka mIkIE)


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

Offline rmgjunk

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #6 on: December 05, 2009, 11:51:49 AM »
Hi guys,

Here in Brazil we get all our meds and labs for free, but there are consequences.  Here is what I've heard/been through so far:

New drugs take some time to start being distributed, and there's a strong bias toward non-patented, cheaper drugs.  Generic Combivir plus Efavirenz or Kaletra are the first line therapy.  Integrase or entry inhibitors are only available if you have documented resistance (or high intolerance) to the regular combos.  There must be a valid reason to get the more expensive drugs.  Most Brazilians wouldn't be able to afford the drugs anyway, so better some than none (minimum wage here ~ US$3600/year, most people make less than 10K).  We only get genotype resistance tests if there is treatment failure, not on start of treatment.

For the public health system in general... well, sometimes it works, sometimes it doesn't.  It depends on the state and city you live in.  Being close to a public university hospital helps.  My mother uses the public system exclusively, does her yearly mammography/paps there, found a breast cancer, treated it for free including surgery, chemo and radio, and gets her tamoxifen for free now.  But people literally die on the lines on some places in the country.  Nevertheless, you can always walk into a public hospital and be treated, sometimes badly, but at no cost.

Leatherman/ComputerTutor/mIkIE: I'm glad that "the three of you" can manage all this so gracefully! :) That definitely takes planning, wits, and balls.

[]s
Roger
14-Sep-2009 Tested positive
Last labs: VL <47, CD4 441/29%
Current meds: AZT, 3TC, Nevirapine

Offline GSOgymrat

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #7 on: December 05, 2009, 12:15:27 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.

Offline Miss Philicia

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #8 on: December 05, 2009, 12:43:26 PM »
I'm an American citizen who has been on public programs for the past eight years.  I get all my medications for free as well as treatment and lab tests.  Not only that, but because of the very progressed nature of my HIV I've been on things like Fuzeon which are also the very most (by far) expensive HIV medications.  I also went on recently approved new HIV meds (Prezista, Isentress) as soon as they were FDA approved.

My doctor is also as good, if not better, than any private doctor I had the first eight years of my treatment when I was employed.  As the actual medical director of the largest HIV clinic in the country's fifth largest city he's very involved in publishing papers and conducting studies, as well as attending lots of conferences.  He also taught a class or two at an Ivy League institution at one time, though I'm not sure if he is currently.  For example, when I went in for my appointment last week I was his last patient, and he was going to be the guest speaker at Princeton University's World AIDS Day dinner to discuss current HIV research and holistic treatment issues and how they impact a clinical practice.

So yeah, the bottom line is that for me personally I'm getting much better care now than I did when I had private insurance, and I even had a really good private insurance policy at the time.
« Last Edit: December 05, 2009, 12:47:57 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Inchlingblue

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #9 on: December 05, 2009, 12:56:55 PM »
I'm an American citizen who has been on public programs for the past eight years.  I get all my medications for free as well as treatment and lab tests.  Not only that, but because of the very progressed nature of my HIV I've been on things like Fuzeon which are also the very most (by far) expensive HIV medications.  I also went on recently approved new HIV meds (Prezista, Isentress) as soon as they were FDA approved.

My doctor is also as good, if not better, than any private doctor I had the first eight years of my treatment when I was employed.  As the actual medical director of the largest HIV clinic in the country's fifth largest city he's very involved in publishing papers and conducting studies, as well as attending lots of conferences.  He also taught a class or two at an Ivy League institution at one time, though I'm not sure if he is currently.  For example, when I went in for my appointment last week I was his last patient, and he was going to be the guest speaker at Princeton University's World AIDS Day dinner to discuss current HIV research and holistic treatment issues and how they impact a clinical practice.

So yeah, the bottom line is that for me personally I'm getting much better care now than I did when I had private insurance, and I even had a really good private insurance policy at the time.

It sounds like a person has to have AIDS and go on disability before receiving that kind of care. Not exactly a ringing endorsement for the state of health care in the US.

As I mentioned before, if you are poor or rich you can get coverage. Or if you have a job that has excellent benefits and you don't dare lose that job or risk changing jobs, etc. Keep in mind many jobs offer sub-par coverage. One guy was on here recently saying he has insurance but his Atripla co-pay is over $500/month. Woo hoo. What good is that? He's part of the many millions who are under-insured.

Leatherman: I understand you had to jump through hoops to re-instate coverage once you moved. This should not happen, a person should be able to move freely within their own country without those kinds of stumbling blocks. Having said that, you will at the end of the day, be covered. That's a lot more than can be said of many millions who can't get coverage no matter how many hoops they jump through.
« Last Edit: December 05, 2009, 01:03:26 PM by Inchlingblue »

Offline GSOgymrat

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #10 on: December 05, 2009, 01:43:26 PM »
. One guy was on here recently saying he has insurance but his Atripla copay is over $500/month. Woo hoo. What good is that? He's part of the many millions who are under-insured.

Being under insured is often worse than having no insurance. Our county mental health agency will often pay 100% for people who have no insurance to be hospitalized. However if you have a any kind of insurance, no matter how little they pay, you don't qualify. To be hospitalized psychiatrically at the community hospital where I work costs about $1000 a day so if your plan pays 20% you are looking at $800 a day. If you weren't depressed when you were admitted you will be when you get the bill.

Offline Miss Philicia

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #11 on: December 05, 2009, 01:48:13 PM »

Leatherman: I understand you had to jump through hoops to re-instate coverage once you moved. This should not happen, a person should be able to move freely within their own country without those kinds of stumbling blocks.

Conversely, I moved from NY to PA with no issues like he had.  However, I made a trip here two months in advance to meet with someone at an ASO to assure myself things would go smoothly.
"Iíve slept with enough men to know that Iím not gay"

Offline leatherman

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #12 on: December 05, 2009, 02:12:30 PM »
As the actual medical director of the largest HIV clinic in the country's fifth largest city
It sounds like a person has to have AIDS and go on disability before receiving that kind of care.
of course,as they say, it's also all about location, location, location.

my city in Ohio had only one ID doc for the first 7 yrs I dealt with my HIV/AIDS. I firmly believe that the care I received during some of those early years could have been labeled "sub-par" compared to care others were receiving at the same time, say in San Fran or NY. That was more a fault of demographics than the doctor though. One of the disadvantages of living outside any large city is that there can be fewer people in an area with a medical issue and therefore fewer treating physicans with less up-to-date skills.

I switched to the 2nd ID doctor in town 4 months after he set up practice. However a few years later, the first doctor was no longer practicing (licenses revoked due to his alcohol problems), leaving only one ID doctor in the county once again. Then almost 2 years ago, my doctor added a partner to his pratice (my late partner was the 2nd patient for my doctor's practice partner). However, as it was in the past, there still aren't really any other choices in the county. In the past, you only had the choice of that one doctor or no doctor at all. Now if you don't like the doctor or feel you're not receiving proper treatment, you have the choice of no doctor or his partner.

the county I live in now in SC has about half the population of my old OH county (interestingly and sadly, according to the states' documents, there are approx 303 known HIV infections in this SC county, which is very close to a similar but smaller amount of 270 in that OH county), and there are only two ID docs here also. One, at the clinic I go to now, is only part-time and drives in from Charlotte NC two days a week, while the other doctor is on the other side of the county.

Conversely, I moved from NY to PA with no issues like he had.
all of my problems have come about because OH did not provide me with a piece of paper stating that they were no longer supplying me benefits.  ::) I had every other bit of information imaginable except that one thing. Matter of fact OH actually continued issuing me a medicaid card and food stamps for another two months before they finally closed my case though I had spoken on the phone and gone in personally to see my OH case worker before moving. It took 4 more phone calls and three letters from SC (including a letter from the health dpt and one from the clinic here in SC) to get OH to finally terminate my case. In October, I drove about 800 miles (up and back) to cross the state line and purchase nearly $500 worth of food with the OH food stamp benefits that they were continuing to give me. ::)

I finally received that termination notice on Nov 9 (three months to the date of when I arrived in SC) and got the SC medicaid card the day before Thanksgiving. I am hoping to have the food stamp issued resolved by Christmas LOL And that should happen as I have that OH notice in my hand, and an appt with the health dpt on Monday to resolve the food stamp application. At least when that goes through I won't have to drive so far for groceries  :D
leatherman (aka mIkIE)


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

Offline aztecan

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #13 on: December 05, 2009, 02:32:17 PM »
of course,as they say, it's also all about location, location, location.
. . .  However, as it was in the past, there still aren't really any other choices in the county. In the past, you only had the choice of that one doctor or no doctor at all.

I think I mentioned this in another thread recently, but I am in this situation right now. The doctor we have here is the "Lone Ranger," so to speak.
I'm glad we have him and I am pleased with his care. But the poor guy wanted to retire three years ago and is nearing 70.

So what happens if he does retire or something? We get to drive 200 miles - one way - to the nearest other doctor.  I used to do that in the early 90s. It wasn't fun.

At least the nurses at the hospital no longer panic when an HIV positive person is admitted.

As for affording meds, we do have comprehensive insurance available with a program that will pay the premiums - if you fall under the income cap.

I have private insurance through my employer. It isn't bad, but I still pay $256 a month in copays for my meds. I don't have any assistance, that is all out of pocket expense.

I know others who, as someone mentioned have insanely high copays, like between $450 and $500 a month for Atripla.

There is a program that can assist with that, if you are eligible under the current income guidelines.

So, we play it by ear and do the best we can. We can't all live in big cities, nor do we all wish to.

But there are times I wish I had the services offered there.

For now, I am glad my doctor is here.  I have no desire to start making that 400--mile round trip again.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline leatherman

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #14 on: December 05, 2009, 02:52:46 PM »
We get to drive 200 miles - one way - to the nearest other doctor.  I used to do that in the early 90s. It wasn't fun.
in the mid 90s, I had to drive my first late partner up to the Cleveland Clinic (roundtrip 120 miles) not only for the clinical trials he participated in (for which travel expenses were not reimbursed) but also a couple of times for actual treatment, as the doctor in Canton did not have the actual experience/knowledge. Thank goodness I was still well enough to drive and that we had a car back then.

But there are times I wish I had the services offered there.
My old Ohio city didn't even have an ASO (the Ryan White Fund was managed through a Family Support org) which is why it annoys me sometimes to hear people whining that no one will help them. When there isn't anyone to help, you learn to do it all on your own, or you accept the consequences.

Another issue concerning location (and similar to my food stamp issue) and to which I have a question, is that medical cards from one state are not usually accepted in other states.  Does actual insurance coverage cross state lines? Although the city of Charlotte is actually a few miles closer to my house than the city of Fort Mill (where my house address is because we live in SC, in  the county, and right next to the state line), I don't have coverage that extends to the doctors in that city in the other state.
leatherman (aka mIkIE)


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

Offline bocker3

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #15 on: December 05, 2009, 02:53:00 PM »
UK SL, you have to remember that most Americans are used to living in a brutally repressive society, so they're at least conditioned to accept this sort of thing. 

As for the health care issue -- yes, we have an extreme need to reform and make it both more affordable and  accessible to all Americans. 
I, however, don't see how the U.S. is a "brutally repressive society" -- and in fact find your assertion beyond absurd.  Myanmar is a "brutally repressive society" Sudan is a "brutally repressive society", not the U.S.

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 Miss Philicia

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #16 on: December 05, 2009, 02:56:28 PM »
We can't all live in big cities, nor do we all wish to.

But there are times I wish I had the services offered there.

For now, I am glad my doctor is here.  I have no desire to start making that 400--mile round trip again.

I'm sure I could find you a country place here where you'd only be driving 30 miles each way. 
"Iíve slept with enough men to know that Iím not gay"

Offline RapidRod

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #17 on: December 05, 2009, 03:17:34 PM »
We have 17 full time infectious disease doctors in our clinic and dozens of Interns in training. Don't have any complaints in service or treatments.

Offline skeebo1969

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #18 on: December 05, 2009, 04:20:20 PM »


When you tell the average American how things are for working class people in Europe, he really can't believe it.  The reactions range from 'how is that possible?' to 'why would They give you that?', but in any case nobody can believe happiness and well being for most is actually achievable in this life.  The next, of course.  They believe that.

  The reason I feel cheated after all those years of saying the pledge of allegiance to the flag in grade school.
I despise the song Love is in the Air, you should too.

Offline aztecan

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #19 on: December 05, 2009, 04:39:09 PM »
I'm sure I could find you a country place here where you'd only be driving 30 miles each way. 

I may take you up on that one of these days.  ;)
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Moffie65

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #20 on: December 05, 2009, 05:59:26 PM »
Hey Mark,  Try looking up Carl Salka in Durango.  He was working for the VA when I was dying with PCP, and his creativity and stuborn "give a damn" kept me alive to now give you his name.  I know there is a state line involved, but I bet NMAS, and Santa Fe would find a way to make it work for you guys up in the four corners.  I have no idea if he is still in infectious disease, but I would bet he still is, and he is literally an angel.  Cute too.  :)
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Moffie65

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #21 on: December 05, 2009, 06:08:35 PM »
UK SL, you have to remember that most Americans are used to living in a brutally repressive society, so they're at least conditioned to accept this sort of thing.  

OH Lord, you are certainly the pot calling the kettle black!!!  From a country that still has perverted, unelected Kings and Queens, demanding everything but a normal life; an underclass that is neither healthy or inviting, a country that is so affixed in the past they have to sell their bridges to capitalists in Arizona to raise cash.    

Sorry Lord, you shouldn't condemn things you know nothing about.  I may be poor, but I certainly know how to raise myself out of my current state and find an economic and healthy peace.  It might just take a few years.  

Mine are not the words of a poor man in a "Brutally Repressive Society"?
« Last Edit: December 05, 2009, 06:11:56 PM by Moffie65 »
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Ann

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #22 on: December 05, 2009, 07:41:03 PM »
As someone who has lived under both the US medical system and the UK medical system, I sure know which one I'd rather have.

From what I see here in these forums, one of the big differences between the socialised medicine in the UK and the socialised medicine (I'm calling a spade a spade) in the US is that in the UK, I don't ever have to beg for my care. In the US you have to periodically fill out reams of paperwork and hope that the correct paperwork lands on the correct desk. Then you get to wait - and if they screw something up on their end, you get to beg them to have another look. It's the worst thing you can do to people who aren't well in the first place. From what I've seen here, this begging paperwork goes on with insurance as well. You guys can't win. Appalling.

All I ever had to do to qualify for medical care in the UK is to prove that I'm a legal resident. Once. Nineteen years ago. Never again since.

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 tokyodecadence

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #23 on: December 05, 2009, 07:46:11 PM »
Hi guys,

Here in Brazil we get all our meds and labs for free, but there are consequences.  Here is what I've heard/been through so far:


I almost moved back to Brazil when I found out for the health care. But the wages there would make me so sad. :p My sister moved back though, and she loves it. But then again, she also doesn't have the hivy.
[.Fod„o.]

Offline leatherman

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #24 on: December 05, 2009, 10:12:26 PM »
From what I see here in these forums, one of the big differences between the socialised medicine in the UK and the socialised medicine (I'm calling a spade a spade) in the US is that in the UK, I don't ever have to beg for my care.
wow. you ain't just whistling Dixie. ;) That's a good observation there Ann ;)
I was just talking to my Mom about my situation the other day and explaining how the very agencies (especially the gov't ones) set up to "help" people in bad situations are the worst ones about de-humanizing those very people.

back in 1993 when I saw how the system treated Randy as he "begged" for assistance, I swore I would never stoop to those levels. However, 2 days fresh out of a 5-day hospital stay with PCP, having nearly met death put a different perspective on it all, and I was sitting in an OH welfare office ready to do my begging for medical help. (and it took 2 months before I got that help and was able to get onto newer HIV meds rather than the AZT I had been on beforehand)
leatherman (aka mIkIE)


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Offline Cliff

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #25 on: December 06, 2009, 05:06:22 AM »
OH Lord, you are certainly the pot calling the kettle black!!!  From a country that still has perverted, unelected Kings and Queens, demanding everything but a normal life; an underclass that is neither healthy or inviting, a country that is so affixed in the past they have to sell their bridges to capitalists in Arizona to raise cash.
This Lord is not British.  He, apparently, lives in Thailand and is American.

Regarding the original message, it's based on a flawed assumption about health care in the US.  When I first moved here, I was constantly asked how could I afford to pay for my health care out of pocket.  I think a lot of British thinks that ALL Americans have to pay for their health care out of pocket, which is not the reality of the situation, even more so for those living with HIV.
« Last Edit: December 06, 2009, 05:25:28 AM by Cliff »

Offline carousel

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #26 on: December 06, 2009, 05:37:02 AM »
When I saw this thread yesterday, I winced at the message.  I wouldn't do without our National Health Service, but it seems a bit strange to message your pity about the US system to a group mainly living there.

The other thing is that I do hope Moffie was being ironic.  But on the surface, I read your message as pure bile directed back at all of us living over here, rather than at the person, who's message you took offence at.  I think that's unfair.

Online BT65

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #27 on: December 06, 2009, 07:30:58 AM »
Well, here in Indiana, they do have disability Medicaid.  But, a person has a spend-down they have to meet in medical bills each month (yes every month) before Medicaid will pay anything.  My spend-down amount was $!38/month.  What results from this quite often (at least for me it did) was being billed whatever Medicare doesn't pay, because of being unable to meet the spend-down each month.  Like, right now, I owe a bill of a little over $300.00 to the huge organization my doctor's office is owned by.  Luckily, they'll accept $10/month.
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Offline Inchlingblue

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #28 on: December 06, 2009, 10:24:27 AM »
Miss P & Leatheman: I was wondering, when moving to another state, doesn't a person first have to establish residency (usually takes 6 months) in order to be able to apply for any benefits offered by that state? Is that what you had to do?

Offline UK_SL

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #29 on: December 06, 2009, 10:26:03 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.
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Offline Inchlingblue

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #30 on: December 06, 2009, 10:36:05 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.

I think it's good to bring this topic up, it's a valid area of discussion. You should not have to apologize.

Offline leatherman

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #31 on: December 06, 2009, 10:51:35 AM »
Miss P & Leatheman: I was wondering, when moving to another state, doesn't a person first have to establish residency (usually takes 6 months) in order to be able to apply for any benefits offered by that state? Is that what you had to do?
establishing residency is easy between the states. basically, along with your birth certificate and Social Security card, you just need to obtain a state drivers license/ID card for which you need either a utility bill in your name and new address, a piece of mail forwarded from your old address to the new address with an offical Post Office change of address label, or a gov't check with your name and address. Many states will also take other documents like mortgage papers or military orders also. Usually the process takes a month or less until you can get one of those documents.

Since I moved in with family and the utilities where already in their names, I couldn't use that form of ID. That is usually the quickest way since those services usually send you the first bill within a few weeks of establising service. Instead I had to wait (nearly the same amount of time) for a forwarded piece of mail or until the first of October to receive my Social Security disability check with the new address. When the SS check arrived first, I became an official South Carolinian on Oct 2 (just 3 weeks after my arrival into the state on Sept 9) after filling out a short form, taking the eye test, surrending my still valid Ohio drivers license and having my pix taken for my new license.
leatherman (aka mIkIE)


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Offline Inchlingblue

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #32 on: December 06, 2009, 10:55:09 AM »
So they don't require you to live in the new state for at least 6 months before officially becoming a resident there?

Offline Miss Philicia

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #33 on: December 06, 2009, 10:55:54 AM »
Miss P & Leatheman: I was wondering, when moving to another state, doesn't a person first have to establish residency (usually takes 6 months) in order to be able to apply for any benefits offered by that state? Is that what you had to do?

No, I did not have to do that.  My ADAP coverage was seamless when I moved here (well, there was a flub up due to my new PA case manager's husband getting run over by a bus and killed a few days after I filled out all my forms and then the entire file was lost.  Lots of mayhem, but the person filling in eventually got me my meds the first month with an "emergency form" that they use here... but that situation was so odd that it doesn't count!).

The only stuff I had to do was fill out a couple of forms, provide income verification (easy in my case on SS) and show something with my new address on it.  I didn't even have a real lease or even utility bills at that point as I was living with a friend, but I must have explained that and maybe showed them my cell phone bill.

Really, it wasn't that big of a deal.  Maybe the states in the northeast are just a bit more sane with things.
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Offline leatherman

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #34 on: December 06, 2009, 11:08:23 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.
there's plenty of healthcare in America, but you made a valid point. whether it's through state/federal assistance, or private insurance, there are a lot of hoops to jump through to obtain healthcare (and if you screw that up you can be denied or find that even more hurdles are put in your path) and obtaining healthcare often costs quite a bit.

The shame of our system I think is that quite often when you are the sickest and need healthcare the most, the challenges to getting it are overwhelming and the procedures to obtaining it are de-humanizing. Of course, anyone in America can go into any ER and get healthcare immediately; but if you don't already have coverage through a gov't or private agency, you quickly become a second-rate patient and are treated as such, until you can obtain some sort of coverage.
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.
The "best" way to experience that second-rate patient treatment I spoke of is to be labeled as "self pay" (that's no insurance or state coverage, where you are paying the costs out of your own pocket)
leatherman (aka mIkIE)


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

Offline Nestor

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #35 on: December 06, 2009, 05:42:16 PM »
For me--and it is ironic that I should have to say this--getting HIV was a big step up in terms of health care.  I had never had insurance in my life; at the job where I worked through most of my years in the U.S., I would have had to pay several hundreds of dollars a month for insurance, and it just didn't seem reasonable.  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.  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.  

The problem, of course, is that the millions of people in the situation I was in then do not go to the doctor when they have a small problem--for the uninsured, a simple doctor's visit of three minutes cost, ten years ago, seventy-five dollars, plus another twenty or thirty for whatever medicine the doctor prescrubed) and so small problems can grow into large ones.  

Once I had a terrible toothache.  The dentist insisted that I needed a root canal, which would have cost more than a thousand dollars.  This was impossible, and he finally agreed to give me a temporary filling, for a mere three hundred or so.  I have never needed a root canal; whether the "temporary" filling is still good all these years later, I do not know, but at the only subsequent dentist visit I have had--which was about six years ago and three years after the one that gave me the filling) they said that there was no tooth in need of a root canal, and if there ever had been, then the tooth must have remineralized on its own.

At the only other dental visit I have had in my adult life--this one in 1995--they insisted on removing my wisdom teeth, and I refused.  "If it ain't broke, don't fix it", said I.  In the fourteen years which have elapsed since then have, my wisdom teeth have revealed no need to be removed.  I have learned never to trust a dentist.

The problem I have with our system here is the idea of "pre-existing conditions."  This means that if I have HIV, or have had cancer or a heart attack, no insurance company will sell me insurance: as a for-profit company, they want to get more from us than they give.  The point is, I suppose, to intimidate people like the young me into paying those three hundred a month, every year for twenty or thirty healthy years, so that when we do need health care we shall already have paid more into the system that we shall have gotten out of it.   I simply wasn't prepared to make that sacrifice, and when I think of the few pleasures I had in my twenties, and how I would have had none of them had I been paying into that system, I am very heartily glad that I did not.  

Another way to put this is that the poor are discouraged from seeking preventative care.  A minor problem that would be cheap to fix goes ignored until it becomes a major problem.  This is one reason why we spend so very much more on health care here than people in any other country do.  

Now I have HIV.  Anyone in New York who makes less than, I think, 45,000 dollars a year--and I make far, far less than that--gets ADAP.  This pays not only for my periodic blood tests and doctor visits, and, I assume, any HIV medications I might one day take, but I shall in the next two months be visiting, alas, both a dentist (my doctor insists) and a dermatologist.  Both will be paid for entirely by ADAP.  I almost feel guilty accepting all of this for free.

Why do I feel guilty?  Because my poor mother's life, in its last two years, was clouded not only by cancer but by incessant struggles for health care.  Here, Ann hit the nail on the head: the horrible system made her beg for everything.   A woman who could hardly stand was forced to fill out reams of paperwork and have endless phone conversations pleading for a solution.  Two months before she died she was sitting up at night studying a hundred pages of impenatrable prose that contained the "fine print" of some new insurance scheme.  That is what is wrong with our system.

The health care she did recieve was very, very shoddy--until near the end.  When she had deteriorated to the point where she had become an "emergency" case, then suddenly a great deal of adequate health care became available to her.  It was too late.  I remember seeing the state-of-the-art facility that magically opened its doors to her when it was already too late, and wondering what might have happened had such care been provided two years earlier.  I am convinced that a rich woman with my mother's cancer would still be alive today.  

One of the first times I really liked something President Obama said was when he mentioned his own mother experiencing something very similar.  

But is this reprehensible?  I always like to put things in historical context.  In China, traditional medicines are often very cheap, but certain items--rare ginsengs or herbs from remote mountains--are quite costly.  There is a legend about a girl who spent seven years travelling to the western mountains to find herbs that would cure her lover--if you couldn't didn't have someone willing to do that, and you couldn't afford the rare ginseng or herb where you lived, you didn't get them.  In Europe in the 19th century medical care often took the form of being sent to take a cure in the medicinal waters of some town like Baden or in a sanitorium in the Alps; if you couldn't afford to go, too bad.  In The Brother's Karamazov, Snegiryov's family, besides living in crushing poverty, are afflicted with the worst health.  When a rich neighbor pays for a doctor to see them, the doctor decides that the son must go to Syracuse in Sicily, the daughter to the mountains of the Caucasus, and the mother must consult a specialist in Paris.  When Snegiryov points out that he can barely afford bread, the doctor replies: "That, alas, is not my business."  (Later on in the same novel, Dostoievski subjects the cult of the specialist--plus ca change!--to outrageous parody when the Devil, in Ivan's nightmare, mentions a bad cold which sent him to a specialist in Paris. The doctor was able to cure his left nostril, but to cure his right nostril he had to seek another specialist in Vienna.)  

In other words, neither in the East nor in the West has there been, historically, any conviction that health care is something to which all people have a right regardless of their income; on the contrary it has been a luxury and accepted as such, although from Dostoievski we can see that there was some resentment against this.  Yet we, today, do have such a conviction, and I think it is a reasonable one.  When our whole society being as wasteful and extravagant as it is, and when our governments spend as much as they do on frivious or vicious pursuits (the Monica Lewinsky trial, or ten years and millions of dollars to "study" the feasibility of high-tech voting machines--whereas as high-tech a country as Japan does just fine with people writing the name of their preferred candidate on a slip of paper--or foreign wars) it seems obscene that some level of basic health care should not be provided for everybody.  

 I wonder whether it would be of interest to anybody who cares about these issues to glance at the following articles.  The first two are both from Deroy Murdock, neo-conservative who states essentially that the health care in the United Kingdom is far worse than ours; the next two, from Nicolas Kristof of the New York Times, state that ours is far worse than that of the United Kingdom.  The odd thing is that each backs up his case with facts, and yet their cases are diametrically opposed.  

Pro:

http://article.nationalreview.com/?q=NjhmOGU0MDdhM2Y5YmEyMzVmNjZhZWZiMTA3ZTQyOTA=

http://www.realclearpolitics.com/articles/2009/08/07/government_medicine_should_horrify_americans_97810.html

Contra:

http://www.nytimes.com/2009/11/05/opinion/05kristof.html?_r=1

http://www.nytimes.com/2009/09/13/opinion/13kristof.html

Finally, this article that purports to refute Kristof's arguments in the first of the two articles above:

http://blog.cleveland.com/letters/2009/11/nicholas_d_kristofs_health_car.html.

I have not found any response to Murdock's articles from anyone on the "other side".  

Any comments from anyone who enjoys analyzing data of this kind would be very interesting.  

« Last Edit: December 06, 2009, 05:46:48 PM by Nestor »
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 Miss Philicia

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #36 on: December 06, 2009, 06:17:02 PM »
Nestor, do you think people read your posts when they're that long?
"Iíve slept with enough men to know that Iím not gay"

Offline bocker3

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #37 on: December 06, 2009, 06:47:46 PM »
I simply wasn't prepared to make that sacrifice, and when I think of the few pleasures I had in my twenties, and how I would have had none of them had I been paying into that system, I am very heartily glad that I did not.  

When our whole society being as wasteful and extravagant as it is, and when our governments spend as much as they do on frivious or vicious pursuits (the Monica Lewinsky trial, or ten years and millions of dollars to "study" the feasibility of high-tech voting machines--whereas as high-tech a country as Japan does just fine with people writing the name of their preferred candidate on a slip of paper--or foreign wars) it seems obscene that some level of basic health care should not be provided for everybody.  

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.

Now, I DO believe that we should provide healthcare to all Americans, however I had to point out your logic here because I do believe that it gets to the crux of why it is so difficult to get health reform done.  Quite simply -- too many want everything, but want others to pay for it & so few are willing to make any sacrifices for the greater good.

(Sorry, Miss P, I guess there was at least one who read this long, rambling post)

Mike
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May2013 691/31% <20

Offline leatherman

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #38 on: December 06, 2009, 07:05:49 PM »
Nestor, do you think people read your posts when they're that long?
my, my. testy today aren't we?  ;) :-*

I often read a whole book in a day, so it only took a few moments to read all of Nestor's post. (though I will admit I wasn't too interested in following his links; but more power to him for pursuing a subject - that's one of the great advantages to having an internet connection and instant access to knowledge) Having written many a long post myself, I just had to put in my 2 cents to defend the long-winded. ;) Often, I think people need to write a bit more to explain their thoughts so that we readers know where they are coming from. Quite frankly, I've often seen the quick little one-liner quips create quite an unwarranted dust-up. Plus around here, you should know that if you don't explain, link, and footnote nearly everything you type, someone will try to tear it to sheds.

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.  ;)
leatherman (aka mIkIE)


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Offline northernguy

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #39 on: December 06, 2009, 08:02:38 PM »
It really is heartbreaking to be on the outside looking in at the US system, and read some of the panicked posts here about losing their medical coverage and faced with the choice of bankrupting themselves and going on welfare or getting meds.  Its a false choice. 

Here the approach is that meds will keep you (hopefully) a healthy and working member of society.  However, while British Columbia covers the cost of HIV meds, some Canadian provinces require co-pays.  Its too bad there wasn't a national standard, but that would mean the Federal government stepping on the powers of the provincial governments.
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline Assurbanipal

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #40 on: December 06, 2009, 10:36:04 PM »
...- that's one of the great advantages to having an internet connection and instant access to knowledge) ...

I think what Nestor had was instant access to opinion.  And the opinions of Mr. Murdock seem rather ... um .., let's say ...unpersuasive... what one might call poorly thought through special pleading.

Let's just start by saying that if the US spends 50% more of its gross domestic prodiuct on health care than other countries one would expect the US to be better in most categories of health care and to have overall better health outcomes.  Mr. Murdock's argument is that the US performs many more procedures (not a good thing if they are not necessary -- unless you believe in recreational medicine  ;) ) and that the US treats some diseases better.  Unfortunately he cannot make the case that most outcomes are better -- because they aren't. 

In essence, it is not surprising that if someone looks through the evidence with both hands, that even when the average care in the US is worse there are some places where it is better.  But, spin as you may, that is not a great argument for keeping the US healthcare system unchanged -- that's a pure logical flaw in his argument.

And when you look into the details, his case that US care is better is a bit shaky.  It rests mainly on cancer fatality rates as a percent of cancers diagnosed.  It is common knowledge that the US is much more aggressive at screening for cancer, and catches many cancers that are so minor they will not kill you.  So the US number of total cancers is bigger, because it includes less serious cases.  But that makes the stats he cites meaningless -- to look at the real comparison you'd need to look at total cancer deaths per hundred thousand, adjusted for the relative population ages.

His heart disease stats are better, although they should be adjusted to reflect  the relative ages of the populations -- but actually heart disease is likely a comparative strength of US medicine according to various studies -- but that doesn't make US health care in total measure up to what is available on average overseas.



5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Inchlingblue

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #41 on: December 06, 2009, 11:25:02 PM »
Assubanipal,  your mind on these boards is always very clear and your opinions well-thought out and beautifully expressed.

Offline leatherman

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #42 on: December 06, 2009, 11:27:28 PM »
I think what Nestor had was instant access to opinion.
quite right. not everything you read on the net is true. Thankfully though, I believe that more good factual data exists out there actually than biased opinions. It just takes some work to sift through the chaff.

And the opinions of Mr. Murdock seem rather ... um .., let's say ...unpersuasive... what one might call poorly thought through special pleading.
but Nestor never quoted Mr Murdock, nor said he agreed with that opinion. Nestor just mentioned the comparison between Murdock's and the contra opinion as issues worth looking into (shifting through the chaff, so to speak).

I took enough math/statistics courses in college to understand that numbers can be, and are, twisted to mean just about anything. You pointed out yourself the discrepancy in this kind of data by how cancer diagnoses and cancer outcomes are counted. I just finished reading "The numbers game : the commonsense guide to understanding numbers in the news, in politics, and in life" by Michael Blastland and Andrew Dilnot. Though it took me two days to finish, it was an interesting book about this very subject.

Too be honest, I pointed out that I hadn't even bothered looking through the links. Just seeing the profit margins of the insurance companies tells me that the money for American health care is mismanaged and far too much of it ends up as profits rather than back into the system for healthcare.

overall the American education system is that way too. The baptist high school I attended still charges a tuition of less than $5000. When I read that we are spending on avg of $10k per student in the public system resulting in worse test scores and worse graduation rates (which sound like decent markers to judge the data by), I know money is being squandered somewhere.

I'm a firm believer that a "public option" with basic care, and a general participation requirement (young people paying into the system as they will be withdrawing from the system at a later date) would help push our healthcare system into being a better system.

Another way to put this is that the poor are discouraged from seeking preventative care.  A minor problem that would be cheap to fix goes ignored until it becomes a major problem.  This is one reason why we spend so very much more on health care here than people in any other country do.
Nestor's opinion doesn't read like he agrees with Mr Murdock's opinions anyway, rather his post seems to point toward his belief that our American system does not function properly, so I think we're actually all in agreement here. ;)
leatherman (aka mIkIE)


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

Offline Inchlingblue

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #43 on: December 06, 2009, 11:45:27 PM »
As dissatisfied as I am with the health care system in the US and as bad as insurance companies can be, part of the reason the system does not work is that the young and healthy opt out because they can't afford it. I did it too when I was in my 20s and my job did not offer it, I could not afford out-of-pocket premiums on health insurance.

That's why a single payer system that forces everyone to be on it, such as in the UK etc., makes sense from an economic standpoint. The pool has to be big enough in order for it to work.

This is something that private insurance companies wanted as part of health reform since it would mean so many more new customers, many of them young and healthy. But if it means they can keep premiums affordable and that they can't deny for pre-existing conditions then maybe it would work, even with private insurers.

I have a question for those in the UK: if someone can afford it can they purchase extra coverage over and above what NHS would cover? If so, is it offered by private carriers or by the government?
« Last Edit: December 06, 2009, 11:48:41 PM by Inchlingblue »

Offline leese43

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #44 on: December 07, 2009, 08:08:13 AM »

I have a question for those in the UK: if someone can afford it can they purchase extra coverage over and above what NHS would cover? If so, is it offered by private carriers or by the government?

Yes there is also private healthcare that can be paid for monthly, giving those that can afford it the choice. Some of the larger companies pay for their employees. It's private, not government.

Edited for typo
« Last Edit: December 07, 2009, 03:10:42 PM by leese43 »
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 J.R.E.

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #45 on: December 07, 2009, 09:19:00 AM »
also there are those of us who are covered by the Veterans Administration fully for all our HIV care. 


Tim,


I was surprised to read that the VA cares for 23,000 HIV patients:

http://www.myhealth.va.gov/


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline dixieman

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #46 on: December 07, 2009, 11:27:29 AM »
I have insurance (group policy) through my place of employment... plus I'm vested and when I retire I can continue my coverage at a small cost for retirees... 4 more years to retire but, I'll keep working until I am no longer useful... I'm very fortunate many are not...

Offline Wagner

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #47 on: December 07, 2009, 02:53:42 PM »
OH Lord, you are certainly the pot calling the kettle black!!!  From a country that still has perverted, unelected Kings and Queens, demanding everything but a normal life; an underclass that is neither healthy or inviting, a country that is so affixed in the past they have to sell their bridges to capitalists in Arizona to raise cash.    

Sorry Lord, you shouldn't condemn things you know nothing about.  I may be poor, but I certainly know how to raise myself out of my current state and find an economic and healthy peace.  It might just take a few years.  

Mine are not the words of a poor man in a "Brutally Repressive Society"?

I'd rather have an unelected King or Queen, unbiased and non-partisan, as our Head of State than an elected, partisan figure.  Regardless of Lord's ridiculous statement, yours is equally wide of the mark and not terribly current.

Offline buffaloboy

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #48 on: December 09, 2009, 09:24:46 PM »
I was thinking about this issue recently when the US healthcare reforms made the international news.
Like the OP, I honestly don't know how people cope in the US, having been used to the UK system where you can literally just saunter from one clinic, or one city, to another, and still receive all of your treatment free. I don't think of this as a privilege or luxury, I see it as my right, especially with a disease such as HIV where the efficacy of the treatment depends on rigid adherence.

I find it genuinely shocking that someone here has stated they sometimes skip taking their tablets so they can build up a back-up supply; I would expect this in the developing world, not a country as wealthy as the USA.

I don't know exactly how the Democrats healthcare reforms would impact on people with HIV but, from what I could work out, it seemed like a far fairer system than the one currently in place.

Staying healthy and alive should never come down to how much money you have in your bank account.

Offline Miss Philicia

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Re: LIVING IN AMERICA - HOW DO YOU COPE?
« Reply #49 on: December 09, 2009, 09:38:42 PM »

I find it genuinely shocking that someone here has stated they sometimes skip taking their tablets so they can build up a back-up supply; I would expect this in the developing world, not a country as wealthy as the USA.

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.

Private insurance is even more lenient than five days.
"Iíve slept with enough men to know that Iím not gay"

Offline leatherman

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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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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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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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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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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

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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

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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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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

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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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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.

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 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.
"Iíve slept with enough men to know that Iím not gay"

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

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 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.
leatherman (aka mIkIE)


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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 »

Offline sam66

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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
december 2007 diagnosed +ve ,

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

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 #76 on: December 14, 2009, 09:55:51 PM »
I'm some sort of tabloid-trash reading, RACIST right-wing nutjob.

fixed
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Offline sam66

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  • Keep The Faith ; Fight The Fight
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  ;)
december 2007 diagnosed +ve ,

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.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

 


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