The View From Your Sickbed

by Patrick Appel

A reader writes:

My partner of 15 years and I are both HIV+, and he's hepC+ as well. We're both very well educated and have worked professionally all our lives--he in publishing, myself in finance. We've been lucky enough to live in a city (NYC) where we can almost always be covered by domestic partner benefits when one of us changes employers, which is fairly often in our fields. Two and half years ago, that changed. Publishing went through a major die-off, and he could not find work. Six months later, I was laid off in the first round of banking lay-offs. Unable to afford the COBRA payments (almost $2000/month for us combined, as we're not really a family, remember, plus $40 copay/month times a three drug cocktail for each of us) we lived without our medications or medical treatment for almost a year. The stress was unbearable, and many a night I cried in the bathroom with the shower on, as despite my military service and ivy league education, I was unable to take care of my family in the most basic of ways.

A year ago, I was lucky enough to land a job in retail, at a major bookstore, which pays nothing, but has excellent benefits. Three weeks ago, my partner was diagnosed with liver cancer, which he's at higher risk for because of the hepC. We immediately went to one of the best liver transplantation centers in the US, and his case was picked up by one of the leaders of HIV+ liver transplants in the world. He's on the list, and it may take up to 3 years (highly variable) for him to get his liver. Off the shelf cost is about $400,000.

I voted and campaigned for Obama, and I'm glad I live in this renaissance of what I feel is political honesty and honor. But I'm afraid of changing the healthcare model that I'm working for $9 an hour to provide life to whom I consider my husband. Obama says we'll get to keep our insurance if we want, but he's said things to the gay community, and then let them just float. I'm not in a position to let things float. Yet I believe strongly in universal coverage, as nobody in the US should go through what I went through while unemployed.

Obama's not doing a very good job of selling me on this, and I am, at least for now, against the plan.