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Have We Been Duped? The (Un)Affordable Care Act

In some way, I always knew that "Obamacare" -- or as it is officially known, the Affordable Care Act (ACA) -- was not going to be the healthcare system we need in the U.S. But it wasn’t until I needed my own health insurance that I realized the ACA was not going to be either affordable or comprehensive for many people, including those living with HIV.

See also: The Affordable Care Act and People with HIV and Hepatitis

I guess I am learning the hard way. Having spent hours on the phone trying to sort out the new federal Pre-existing Condition Insurance Plan (which has replaced the previous California PCIP, initiated with new dollars from the ACA), I am now seeing how I was falsely led to believe this was going to be something wonderful. I still believe the ACA is a step in the right direction -- more people with pre-existing conditions will be able to get coverage and more will be eligible for Medicaid -- but at the same time, it will fill the big pockets of the insurance industry and many people will still not be able to get the affordable care they need.

Since I do not qualify for Medicaid or San Francisco’s Healthy SF model of universal coverage due to income and cannot get standard health insurance because I have a pre-existing condition -- AIDS -- I am a classic example of someone who falls through the proverbial cracks of the fractured healthcare system in this country. The ACA is not going to be a fix for people like me.

Let me try to explain this as simply as I can. As a self-employed HIV education consultant, I am trying to make my way with skills I have at hand without the need for public assistance. My income is just over the limit of most entitlement programs. But I cannot afford to pay for insurance that the elite can afford in one of the most expensive cities in the U.S. Also, my AIDS diagnosis prevents me from purchasing most insurance even if I could afford it.

Previously I have always had health insurance through employers, as I have worked despite living with HIV. But deciding to go out on my own as an independent consultant, I was left without the protection of health insurance through a full-time job.

In July 2012, I was thrilled to learn about the California PCIP, one of the first ACA programs that states could opt in or out of. Despite the high monthly premium (over $500 per month) and exorbitant deductible ($2500 per year), I finally had health insurance with a network of providers. And although I didn't have a wide choice of providers, I was able to return to one of my first HIV doctors in San Francisco.

But in mid-year, as a part of the transition into the full ACA implementation, Uncle Sam threw me for a loop by transitioning me from the state-administered plan to a new federally administered PCIP.

This new plan was the same program as the state-run plan, but required another $2500 deductible starting at mid-year. Having almost paid off the state PCIP deductible, I was flummoxed about the costs I was already paying. Share-of-costs from labs and doctors were mounting as well, and I was forced into either paying 3 months of co-pays at a time on medications through a mail-order program or continuing to use my specialty pharmacy in the Castro which requires a higher co-pay. The unaffordability was blatantly clear.

Then I looked at the Covered California website (www.coveredca.com) which lets you calculate how much the ACA will cost you when the insurance exchange are fully implemented. Insurance cost is estimated based on age, income, and number of dependents. The older you are and the more money you make -- even if it is in the middle-income range -- the more you have to pay for "affordable" health care.

In addition to the overall scary prospects for healthcare under the ACA for everyone, the situation for people with HIV is a very big unknown at this point. The AIDS Drug Assistance Program -- part of the Ryan White Care Act that has saved thousands of lives over the years -- may go away entirely in the worst-case scenario, or may simply get swallowed up by ACA programs. No one knows.

So despite all the celebration of a national healthcare plan, the fact is that the ACA is duping people, especially the middle class, people with compromised health and pre-existing conditions, and people spending every last dollar living in expensive cities. If we are ever going to feel secure about healthcare in this country, we need universal health care, and we need it now.

I am sick and tired of fighting for healthcare. I can still hear the famous 25-year-old chant ringing in my ears: "Health care is a right! Health care is a right! ACT UP!"

9/3/13