In November of 2008, I went in for what I believed was going to be a check-up with a new primary care doctor. I knew that for about the past year and a half I’d been getting sick a lot more frequently, but I didn’t really think about that. I just wanted to get the appointment done with.
By the time I was 5 years old I had 9 surgeries for a kidney condition called bilateral ureteral reflux (also called hydronephrosis). As a kid you don’t fully understand that the doctors are helping you, not just poking you with stuff, and by the time I was old enough to understand I had a fear of doctors and hospitals that was embedded as deeply as Indiana Jones’ trauma-induced fear of snakes. Besides, I was an extremely busy guy: I was working part-time for the Clark Planetarium and as a part-time actor, going to college part-time, and was a full-time care provider for the two greatest kids in the world—my niece and nephew. My sister and her husband both had to work full-time to support their family, so I was living in their basement and helping pay rent while taking care of the kids.
The appointment was far from routine. I was told that I had end stage kidney failure, and would need a kidney transplant. That was scary enough. The fact that I had no health insurance made it flat out terrifying. I was lucky, because the generosity of friends and strangers was overwhelming. First of all, a good friend donated his kidney to me (I had so many friends volunteer to be tested that the transplant clinic told me to stop having people call. I really didn’t think people liked me anywhere near that much) I had done a few plays at the Hale Centre Theatre, one of the most popular performing arts organizations in Utah, and they jumped in to raise funds at their performances. I received $10,000 from them that would go towards my medical bills.
The transplant surgery itself cost $79,000. My kidneys were in bad enough shape that a separate surgery to remove them was required, then six weeks of dialysis before the transplant could take place. The medications I needed to keep my body from rejecting the kidney would cost roughly the same amount per month as rent on a one-bedroom apartment.In the end, I was able to have my surgeries and stay alive, largely because of Medicaid.
Among other factors, I was able to receive this lifesaving surgery because of a great nation and state which has the wisdom and compassion to use programs such as Medicaid to help those who need it.
While we have to deal with a crushing stigma that people who need public assistance are lazy or “takers,” most people who need Medicaid are like me: hard working, decent people who don’t think they are “entitled” to anything, they just want a chance to receive the medical care they need to stay alive. It’s been incredibly disheartening since the surgeries to hear the debate over the Affordable Care Act in general, and Medicaid expansion in Utah in particular.
Many friends, even some who made contributions to my surgery, echo the line that they’re being asked to “pay lazy people’s medical bills.” Sometimes I hear the argument that people are willing to give of their own free will, but government programs are wrong. I benefited as much from amazing friends and wonderful strangers as anyone could. I had a theatre which comes close to selling out 500 seats per show, 8 shows a week, asking generous patrons to help, and those patrons opened up their hearts and gave an astonishing amount. But as I said before, it wasn’t enough. Nowhere near enough.
Everybody who doesn’t have health insurance now is at least as deserving of that kind of generosity as I am, but few of them have the kind of support system I had. Tens of thousands of Utahns who fall within the “Medicaid Gap” are losing their health or their lives to the delay on expanding Medicaid, a delay which is occurring purely because of the ideological stubbornness and willful ignorance of the Utah State legislature, who consistently avoid opportunities to hear from the people in the gap and learn who they are and what they need. Utah needs this. And I can’t imagine what could be more in line with the religious beliefs so many in our state (including myself) share than caring for our fellow human beings. It's time for our legislature to support Governor Gary Herbert's Healthy Utah program and help the people of Utah.
After the 2014 Utah legislative session passed without any action on Medicaid expansion, I decided that the best way for me to help was by going what I know best: Film. Though I'm usually a narrative filmmaker who is prone to comedies, action movies and the like, I decided to tackle a documentary, which I called Entitled To Life. The film tells the stories of some of the 57,000 people caught in the coverage gap. I believe that getting to know and understand the human factor of this equation makes it clear that this has to be done. I hope that the spread of the film, and the stories and content of this blog can help to raise awareness of the desperate need for action.