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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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