I was diagnosed with diabetes when I was 15. Before that, I was just another healthy adolescent kid. After that, I was a 15-year-old kid with a “preexisting condition.” At the time, that phrase didn’t mean a whole lot to me. I wasn’t in charge of my own finances yet. And of course, I was still covered under my parents’ health plan. I hadn’t yet had to outsmart an insurance system designed to keep me (and my condition) OUT of the system. That didn’t start until graduation from college, around the age of 22.
When I graduated, I was still living in Boston. My insurance switched over to COBRA, and as always happens, the rates began steadily climbing. Within a few years I had moved to Philadelphia, and it was on me to find health insurance. Now, I have always made either part or all of my money from music in one way or another — either performing or teaching. All of the work is freelance, and it does not come with health insurance. And so I had to figure out how to get group insurance, since private insurance would deny me outright due to my preexisting condition, something perfectly allowable by law.
In Philadelphia, I managed to find a group plan, funded through an arts organization that offered an umbrella for people like me — artists who needed insurance and were cut out of the loop by that preexisting condition clause in the private insurance markets. It was only offered to residents within the city limits. It was a very unique program. And so I signed up. The coverage wasn’t great — it was an HMO, with a lot of red tape, fairly high deductibles, and a limited network. However, it offered prescription coverage and kept me insured.
Remaining insured without a gap was very important. You see, group plans cannot deny you coverage because of your condition, AS LONG AS THERE HAS BEEN NO GAP IN COVERAGE. Once you have a gap, EVERY form of insurance can deny someone with a preexisting condition from coverage, and we’re left completely out of the loop, on our own, and pretty much out of luck.
I remained on that plan for about four years, until the rates started climbing, the benefits plummeted, and I found myself in the position of paying $180 a month for just my share of insulin, plus a $300 a month premium. The cost was moving beyond what I could afford. Had I been single at the time, I would have had only one option: abandon music and find a full-time job with benefits. My only option would have been to abandon the work I had spent a lifetime building. Luckily for me, I was married, and I switched over to my wife’s group plan, which has been pretty stellar.
Why I’m telling you this
OK, why am I telling you all the story of how I’ve cobbled together continuous coverage for the past 12 years? I’m telling you this because our country’s health-care system, and the president’s health-care law, has been in the news lately. And it’s an issue that has sparked fierce opinion on all sides. Someone opposed to universal health care might point to my story as a reason NOT to overhaul our system — “hey, he managed to find a way, didn’t he? See, it works!”
Someone else might point to the rising costs in my HMO, suggest that it was only through a series of fortunate circumstances that I was ABLE to remain insured, and argue that the system should not make access this difficult. We are all shouting back and forth at one another, full of spiteful, fearful, and grandiose political rhetoric about the impending disaster that WILL happen if we (do or do not) overhaul our system.
But you know what’s lost in all of this? WE are. We, the millions of people who have been fighting insurance companies our entire lives for access to the medical care we need to simply stay alive! Since I was 22, private insurance has firmly held up a stop sign to me and insisted that I go “somewhere else” for my medical care. And I have. I’ve had to be creative and very resourceful, always keeping my eyes open for the NEXT stopgap solution, knowing each one is probably temporary — from my college plan, to COBRA, to the artist’s alliance, to God-only-knows-what had I not been fortunate enough to be married to someone with access to good coverage.
And I’m tired of it. I’m tired of our system. I’m tired of a medical system that is built on profit. In order for ANY company to increase profit, risk must be minimized. That’s economic law. But when it comes to insurance, WE ARE THAT RISK! You and I, and all of the people in this country who most need insurance, all of the people with conditions that require that medical care, are the risk that private insurance turns away.
I don’t know what the solution is — I have my opinions on the Affordable Care Act, you have yours. We may disagree on the solution. But there is no denying the problem. We need a better system. We need a system designed to SERVE the people who need medical help, not turn them away. We need a system centered around CARE, not profit. We need to find a better way.
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