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John-Manuel Andriote

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From Entitled to Entitlements: My Journey From the Middle Class, Through AIDS, to a Place I Never Imagined

Posted: 07/09/2012 5:32 pm

Few words evoke the definition of "dreaded" as bluntly as "root canal."

But there's something even more dreadful than a root canal. It's when the first procedure doesn't fix the problem.

Even more dreadful yet: Because you depend on Medicaid for your dental care, and the dentist who did the initial work doesn't participate in the federal-state insurance plan, you have to find someone else to finally end the pain you've had for seven months.

Now it's a matter of negotiating, trying to get services at no extra cost, when you know damned well your negotiating position is weak at best because you have little money and definitely no money for expensive things like root canals. You can't just storm off and find another dentist, because not many of them participate in Medicaid, notorious for paying low fees to medical providers who prefer to spend their time with full-price customers.

In my nearly seven years of living with HIV, I've seen my income go south in the Great Recession, and stay there, as I found myself marooned in my long-ago hometown, with no local prospects and few coming to fruition outside the area.

It's a long way, in so many ways, from the life I led in Washington, D.C., 10 years ago. Back then I was beginning to renovate a 1924 condo in the Kalorama section of the District. I had a terrific job with a global health organization. I had excellent health and dental insurance through my employer. A nice salary meant I didn't flinch too much when I had to pay $1,000 out of pocket in 2002 for one of the five gum grafts I had done that year.

When I left the job in 2004, I bought an individual Blue Cross policy that gave me access to pretty much every doctor I might need to see. The $1,500 prescription cap didn't matter when all I needed were annual spring allergy meds or the occasional antibiotic.

Jump forward a year, and that cap mattered a great deal. In fact, it was the kick that sent me sprawling down the staircase from the middle-class life of a Washington, D.C. professional to the life at the very low end of the 99 percent where I find myself today.

When my doctor called me a week after my annual checkup and started off with, "I have bad news on the HIV test," the world as I knew it started to teeter on its axis. When I found out, a week later, that I needed to start taking medication right away -- and would need to stay on it the rest of my life -- the world flipped upside down.

How the hell was I going to afford the $25,000-plus per year for HIV medications, to say nothing of the deductibles for medical care and lab work?

The first lesson I learned is that when you have HIV -- or any other "pre-existing" condition -- there is no insurance company in the country that wants you as its customer. So I was literally stuck with the insurance policy I had before my diagnosis.

As it turned out, I was able to get into a clinical trial that provided my medications, free, for 96 weeks. That bought me some time to look at my options.

Nearly two years later, I left D.C. to move "home" to Connecticut. I wanted what I thought would be a more "serene" life where I could work "remotely" without living in a city obsessed with work.

No one anticipated the Great Recession that struck just after my move. Jobs are scarce here in the "boondocks" of eastern Connecticut. We were recently rated by the federal government as the fourth-worst job market in the country. Hundreds of people apply for minimum-wage jobs. Many have been foreclosed. Professional jobs are extremely rare, and people cling to them like lifetime appointments once they're in. It's also challenging to maintain professional contacts when the "social" aspect of networking is missing by living outside the urban mix.

Things got so tight I wound up doing something I never could have imagined in my "former" life: moving in with my mother in her state-subsidized apartment.

My low income qualified me for assistance with insurance premiums, so I maintained my Blue Cross policy -- until I found out one day in 2011 that the local AIDS service organization that was paying the premiums had not paid them in three months, and my policy was canceled.

Even in this blue state, until the 2014 start of the Affordable Care Act's ban on discrimination by insurance companies against people with pre-existing conditions, I can't get an individual insurance policy. Without a "regular" job that provides group insurance, that's out, too.

People in the state health department recommended I go without any insurance for a full six months so that I would qualify for the new "high-risk" insurance pool they were creating.

Believe me when I say it's terrifying to be someone who has seen AIDS kill your friends, horribly and hideously, to now have HIV yourself -- and to be without health insurance.

When the state figured out what to do with the HIV-positive people relying on it to figure something out, I was moved into a new Connecticut Medicaid program for the "employed disabled." Your share of the monthly premium is determined by your income, and you can make up to $75,000.

It's sick and twisted that I feel I'm supposed to be "grateful" that I qualify for an insurance program intended for poor people -- because I have a potentially fatal illness. It's bizarre that having HIV allows me to get my medications free -- rather, paid for by American taxpayers -- while millions of other Americans have to choose between their medications and, say, food.

When I saw Michael Moore's movie Sicko opened in 2007, as this new life of mine was just beginning to unfold, I told myself I wouldn't feel ashamed about accepting whatever publicly funded medical care I was able to get.

I've accepted responsibility for my behavior that led to getting HIV. I will do all I can to live well and responsibly with it, to work and use my skills and talents as productively (and as long) as I can.

But I am not responsible for the crazy-quilt health-care system America clings to.

I've written about it and raged against it for my entire career reporting on AIDS. It's what drove me to document the injustice and plain stupidity of forcing middle-class people into poverty when they became too sick to work, lost their insurance tied to their job, and had to impoverish themselves to qualify for Medicaid simply to get medical care.

I have seen and witnessed the injustice of our health-care system, which views health care as a privilege and profit-making enterprise. Now I am living it.

 

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Few words evoke the definition of "dreaded" as bluntly as "root canal." But there's something even more dreadful than a root canal. It's when the first procedure doesn't fix the problem. Even more...
Few words evoke the definition of "dreaded" as bluntly as "root canal." But there's something even more dreadful than a root canal. It's when the first procedure doesn't fix the problem. Even more...
 
 
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HUFFPOST SUPER USER
celticmaiden7475
11:27 PM on 07/10/2012
I find these comments a sad commentary on where are country thinking is going. Does it really matter if it's HIV or cancer? The point is we have a system where if you get sick you can loose everything and end up with no way to pay the dr. Why should this be the system. So many people act like it could never be them but truth is anyone can get sick and anyone can end up like this or worse.
06:30 PM on 07/10/2012
While I agree our system needs fixing, I think this argument would be far more compelling from someone not suffering from a completely preventable disease. For a grown man who lived through the 80s and 90s to contract HIV in 2004 is not pity-inducing. In fact, I'm a bit offended as a tax payer that I'm expected to pick up the tab for your reckless actions, much like I am for smokers, etc. You say you've taken responsibility for your behavior that led to contracting HIV, but I'm not hearing it in your article. And before the peanut gallery accuse me of being a homophobic pig, I'm a 44 year old gay man - so relax.
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John-Manuel Andriote
HuffPost blogger on health/politics/LGBT issues
09:19 PM on 07/10/2012
First of all, I was diagnosed in 2005, not 2004. It's unfortunate you, a 44-year-old gay man, are "offended as a tax payer that [you are] expected to pick up the tab for [my] reckless actions."

Just what "reckless actions" might those be? You are reading what you apparently wish to read in my words, because I mentioned nothing about "how" I became infected. Frankly, it's none of your business.

And just because you are gay doesn't mean you can't be a "homophobic pig" (your words). There are a lot of self-hating gay men out there. And plenty who project their self-hatred onto others of us. Yours, unfortunately, are not constructive comments.
06:46 AM on 07/11/2012
First, whether it was 2004 or 2005 is irrelevant - my point was you contracted it long after you knew how to prevent infection. Second, I doubt you got it from singing too loud in church so I'm going to go out on a limb and assume you contracted it through unsafe behavior - this is substantiated from your line, "I've accepted responsibility for my behavior that led to getting HIV" - seems pretty clear. As for whether it's my business, it wasn't until you wrote an article in the hopes of swaying public opinion about our healthcare system. Now I'm involved and I'm naturally curious, as are others reading this. My original point was that when someone in your situation writes an article like this, it allows the bigots and haters to discount our need for universal health care, which isn't effective for change. I think the public would be much more swayed by someone with ALS or a brain tumor, something they had no control over and could happen to anyone - that is all I was trying to say. Finally, just because I don't automatically support every thing a gay person says does not make me a self-hating. In fact, as someone who came out in the early 80s and has successfully protected myself from HIV all this time, I would say I'm quite self-loving.
12:34 PM on 07/10/2012
There is no incentive to make more than $30k a year anymore - with all the etitlements you are far richer being poor than middle class.
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boymom
08:09 PM on 07/10/2012
Unfortunately it is middle class people who are going bankrupt because of catastrophic illnesses they did not expect (does anyone expect them?) People who've lost their jobs that in turn lose their insurance. Or people who don't have company insurance and couldn't afford family deductibles in the first place. Most middle class people are NOW one major illness away from bankruptcy. Healthcare should not even be an "entitlement" and is available to all in every single OTHER modernized country. Clearly you didn't even read the column you commented on!
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MotownLinda
07:08 AM on 07/11/2012
I don't know what state you live in, but here in Florida, I can't get any medical help because I make $15,000. THe very few organizations here that would help a 59 year old woman with an extremely painful medical condition won't help me because I make a couple hundred dollars more a month than allowed. Right now, if I don't buy groceries, I can just barely make my bills. I worked my whole life, had insurance through work and now I had to settle for a part-time job that pays half the hourly wage I made two years ago, with no benefits of course. I'm so disgusted and depressed. Life can seem so hopeless sometimes.
11:16 PM on 07/09/2012
watching the US struggle with the concept of universal healthcare is perplexing to say the least. here in australia all HIV meds are subsidised by the state regardless of your income, insurance cover, social demographic. In some states it's fully subsidised - ie they are dispensed completely free of charge, along with any drugs that can be clasified as "associated" to the illness (eg valtrex), and in other states there is a nominal PBS (pharmecutical benefits Scheme) charge of $26 per script. this isnt just restricted to HIV - diabetes, heart disease, really any medication for chronic conditiions falls under the same scheme. The rationale is that it costs the government less in the long term to keep people alive and well, than it does to nurse them through an early painful death.
makes sense
kinda sad the US can't get their head around it
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John-Manuel Andriote
HuffPost blogger on health/politics/LGBT issues
09:57 AM on 07/10/2012
It is crazy, isn't it. What's even crazier is this: The U.S. government spends $25,000/year for the HIV drug Atripla for HIV+ Americans who take it and rely on public resources to pay for it--but the same U.S. government pays only $200 for the generic version of Atripla for use in the developing world. Americans pay more for prescription drugs than any other people in the world. It's wrong and it's totally stupid...but this is what happens when political ideology drives public discourse and policy instead of common sense and fact-based decisionmaking.
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Black Rhino
12:54 PM on 07/10/2012
Wouldn't it be wise to move to a developing nation, and take advantage of the cost differences?

And how exactly did you "take responsibility"? You likely had something of a reckless sex life, you obtained a well known, well feared semi-fatal disease...and now you expect the State to pay for the high costs of that treatment because???
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boymom
07:17 PM on 07/09/2012
AND THIS... is why we need a single payer system in the United States. The last modernized country of its stature not to have one.

But try to sell that to the party that has been taken over by the TeaKoch Brothers Party.
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John-Manuel Andriote
HuffPost blogger on health/politics/LGBT issues
09:59 AM on 07/10/2012
From your keyboard to God's ear!! I agree that we need a single-payer health care system, Medicare for all. If people want additional coverage, they can pay for it themselves. But no American should face bankruptcy and foreclosure because of it a medical catastrophe. It's not good for them, obviously, and it's not good for our country AT ALL.
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sodisenchanted
oh yea, well don't tread on me either!
07:11 PM on 07/09/2012
I am just happy for you that you have been able to find help. You do deserve it as you worked and earned for many years and probably paid a lot of SS and Medicare taxes.

Be glad you don't live in Texas. I worked and paid in for many years, too. Now that I am no longer able because of Lupus, Asthma and some other problems I don't qualify for Medicaid because my husband and I are worth more than $300. We don't even won a house or a car but we are still worth more than $300. It's awful when you have to sell a relatively inexpensive wedding ring that's been on your finger 30 years and the few family mementos you have left to get healthcare.
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John-Manuel Andriote
HuffPost blogger on health/politics/LGBT issues
10:02 AM on 07/10/2012
Wow. Your story is all-too-familiar in our country. Here in the "boondocks" in eastern Connecticut--the poorest part of an extremely wealthy state--stories like yours, and mine, are common. There are constantly spaghetti dinners, etc. to raise money for families that have been overwhelmed by the expenses of a medical catastrophe. It's appalling that Americans are forced to go bankrupt, lose their homes, sell off treasured possessions--just to pay for over-priced medical care. One day, I hope I live to see it, common sense and not political ideology and corporate greed will rule this land.
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sodisenchanted
oh yea, well don't tread on me either!
12:47 AM on 07/11/2012
I hope we both live to see it. I wish you all the best.