I wasn’t going to post about this til later, but it’s suddenly become very timely, so away we go.

Some of you may know that my older brother has severe autism. He can’t speak and for the most part, he can’t really be alone. He can’t take care of himself for the day-to-day stuff without prompting, and some supervision. He’s fairly high functioning for his type of autism, and is capable of doing many things on his own, but he can’t speak for himself.

[Side note: adults with autism? They’re real. Autism is not a childhood condition, and I am among those who believe that it’s not a disease that requires a cure. Sure, early intervention and behavioral therapy can make a world of difference for SOME young children, but the autism will never go away. It’s just the way some people’s brains are wired, a different way of viewing the world, and who are we (the neurotypicals) to say that it’s wrong just because it isn’t what we know and understand. I wouldn’t change anything about my life or his, except the fact that I wish we could trust the world a little more to understand this kind of thing. Fad diets and antivax crazies are detrimental to the situation. Really. Jenny McCarthy can suck one.]

About four or five years ago, he started having seizures. The seizure disorder came out of nowhere, so we were all taken aback by this new development. But we got in touch with some good doctors and one of the few practicing neurologists in the city, and got my brother on a strict medication regimen. It took a long while, and a few more seizure scares before we got the correct medication levels, but we eventually found a combination that seemed to work. These medications are VERY expensive. And they must be brand name and not generic, because in this case, the slight differences in production and formula make a big difference. It’s hard enough that many people with autism have atypical responses to medications (becoming active and agitated on sedatives, lethargic on stimulants, that kind of thing), but basically, it’s imperative that he not be on the generic formulas for these medications. My brother is on Medicaid, and for a long time, there was no real problem with them covering the cost of these medications.

Then, maybe six months ago, Medicaid started futzing around with my brother’s prescription in all kinds of odd ways. One of his medications is a two pills/twice a day kind of thing. So four pills a day for 30 days = 120 pills per month. Someone up in Topeka saw that and decided it would be a good idea to round off that number to 100 pills per month. The next time the prescription was filled, we were short five days’ worth of pills. Obviously this is unacceptable, so we had to go through so much red tape, getting letters from the neurologist, the primary care physician, and the pharmacist, trying to sort out this whole mess. And so for the next few months, we were getting odd fractions of prescriptions. Who ever heard of .61 refills remaining? Ugh.

Then the kicker: Medicaid, or more specifically, some imbecile up in Topeka who knows NOTHING about the details of our case and my brother’s needs, decides that Medicaid will no longer cover name brand prescriptions, only generic. We all thought that was pretty outrageous, not to mention dangerous for my brother’s already sensitive situation. So of course, we fought it again, getting the same letters from the doctors and pharmacists, making calls to Topeka, and cutting through the red tape all over again. Only this time, Medicaid wouldn’t budge. They flat-out refused to cover the cost of the proper prescription, so we didn’t have a choice but to switch over to the generic, which they insisted would be just fine.

After the first switch, which was a smaller dose of one of the three medications he’s on, my brother started experiencing strange and unpredictable changes in his mood and behavior, losing his appetite, becoming easily agitated and aggressive, altered sleep patterns. Because his system is so sensitive to changes in ANYTHING, internal or external, although these effects aren’t generally attributed to these medications, they were definitely due to the sudden alteration in medication. Awesome, right? For the past two months or so, we’ve noticed and been concerned about these new patterns, and kept a closer watch on my brother because we’ve all been pretty sure he’ll have another seizure any time now. No one wanted that obviously, but you can see where this is headed.

Today, around noon, I got a call from my dad that my brother had a seizure today at work (almost all his seizures have happened at work except for one really bad one, Christmas Day 2006. We don’t know why they happen at work, but it could be an environmental or timing thing). We had hoped it wouldn’t happen, but we all knew it was coming. So he was brought home from work (he works in a sheltered workshop here in town every weekday), and thank goodness I’m home today (that’s a whole other post. Hello, I don’t have a job yet) so someone can be at home with him until the end of the work day. His job coach even said to me, “I don’t know what we’ll do when you do get a job.” Yeah.

Now, we’re going to start yet another battle with the good folks up in Topeka (some of whom are the same folks who ask annually whether he still has autism. Out of touch much?) to get him back on the proper medications and prevent this from happening again. Obviously, this shouldn’t have happened at all, but that’s what happens when the people in charge don’t understand the people they’re supposed to be serving. They aren’t just cases and statistics. They’re REAL PEOPLE with real concerns and real needs. You can’t boil it down to numbers and money. These decisions affect the lives of real people and their families.

And some people think the health care system isn’t broken. Out of touch indeed.