Lucas Camilo

A couple days ago Burke wore an old classic CISPES T-shirt into the hospital. It’s a cool shirt with three grainy, black and white photo images and the word “Resistencia” in big letters. When Lucas’s medical team came to his room for the morning rounds the doctors asked about the shirt. Burke thought they’d all love it, and he explained that the woman featured in the images is a nurse in El Salvador who is on strike to defend the public health care system. In the pictures she is bending over, picking up a rock, then winding up to throw the rock back at the riot police who are attacking the hospital where she works. Burke’s enthusiastic story was met with silence and awkward nods from the team, and perhaps that was fitting. Though there’s an acknowledgment around here about the failures of the current health system, few people are ready to hit the streets to make it change.

Which brings us to our current predicament. This past week our health insurance company has been testing every ounce of our patience. While Lucas is clearly ready to come home, our insurance is stalling his departure. For ten days now, somewhere in a United Health Insurance office, our list of medical equipment that Lucas needs to come home – including his vent and trachaestomy supplies – has been making it’s way from the fax machine in-box to someone’s desk. Every day we call and our case manager calls and we get a different answer about what it will take for someone to read the request. Finally yesterday morning we got word that they were going to OK the list of things that are clearly medically necessary and clearly covered by our insurance. Phew! We celebrated because the timing is down to the wire. We needed the approval yesterday so we could get the equipment into the hospital today so the hospital folks who screen the equipment could approve it before they go home for the weekend. Then Lucas will switch over to the home vent and we’ll practice with it over the weekend and bring him home on Monday.

And then a few hours later we got another call from United’s representatives. They said that they’ve OKed the out-of-network medical supply company and the list of items but they won’t pay the quoted rates. We asked if that means we’ll have to (or be able to) pay the difference, but have yet to get an answer. It is enough to make you want to pull your hair out and strangle someone with red tape. While Burke has tried to be level headed, and Lucas just looks cute and Zen-like throughout, Krista is trying frantically to find someone at United to call and scream and cry to… and to ask them if they’d be so difficult if it was their baby who had never seen the world outside the hospital walls. As our nurse over the last few days put it, “This would never happen in Poland!”

Indeed. During this time of a major national health care crisis, with Congress about to vote on measures that will just begin to fix the most egregious of problems (if not make certain things worse by mandating that everyone buy terrible private health insurance), questions about improving the quality and accessibility of health care suddenly feel very personal. Polls show that people who have health insurance are the ones who most fear health care reform, which is hard to understand given how terrible insurance companies are known to be. In our case, the red tape doesn’t even seem to respond to a profit motive – if United wanted to save money on us they’d do everything possible to get Lucas out of the hospital NICU asap.

Of course the government is known for red tape too, but in our case Medicaid/HSCSN has moved much faster than United, thanks in part to a couple people at the DC Medicaid office who helped us expedite our application so we could get home nursing for Lucas as quickly as possible. We applied for special coverage for Lucas two weeks ago – he’s eligible because he needs a ventilator to breathe – and on Monday we were accepted. By midday Tuesday a representative from the agency that works with kids with special needs kids in Washington DC came to the hospital to meet with us and tell us about the program. She told us that they will cover all Lucas’s medical bills that private insurance doesn’t. Wow. Imagine if everyone in this country had a person who visited them with those magical words. Thousands of people, maybe tens of thousands, would be spared bankruptcy, losing their homes, and total disruption of their lives. It’s a nice vision.

While this process has been difficult and emotionally trying, we’re also very aware of the fact that we have it easier than many, if not most, people in this country that struggle with health issues. For one thing, we actually have health insurance unlike millions of people in this country, and even if they screw us over sometimes, they are paying for most of Lucas’s enormous medical care. But there are other ways we have it good too. We’ve grown up with race and class privilege, which among other things has given us the tools and experience to work the system to our benefit. We know what questions to ask, who to push, when to wait, and where to look for other resources. And we usually get what we want in the end. Under normal circumstances we both try hard NOT to use our privilege for personal gain, but in this case we’re working it as much as possible for Lucas’s wellbeing, and at the same time trying not to take away from anyone else with less resources in the process. So although it is infuriating that we can’t make everything work on the exact timetable we’d like, we know that we’re doing our best for Lucas and that we’ll make sure he gets the best care possible out of a broken health care system.

And of course we’ll work not just to Lucas’s advantage, but also in advocating for a health care system in this country that takes care of everyone’s needs. And we’ll dream of the day when we can take “Resistencia” T-shirts to all of Lucas’s doctors and they’ll get excited about the idea of hitting the streets to expand a vibrant, holistic, high-quality public health care system. And we’ll dream of Lucas out there will his fist raised too.