Problems with Insurance Companies
It took quite a while to figure out (accidentally), but we know that Thrack has a collection of genetically linked autoimmune inflammation issues. The two specific disorders he gets treatment for are colitis and iritis.
The iritis is a periodic problem, and one that he has to get treated during specific flare-ups to prevent any further damage to his vision; because it went undiagnosed for almost a year after the first major incident, his cornea and lens became sticky and are now partially immobile. The effects of this are much more visible in low or flat light because as his brain sends the message to dilate pupils, the unaffected eye dilates to a much greater size, overcompensating (often double the other), while the affected eye dilates in an irregularly bumpy shape. I am sometimes allowed to get away with describing him as having a goat eye, but it makes him terribly cranky. He has to treat it during bouts of inflammation by putting steroid drops into his eyes, which is sort of scary stuff. Strong steroids like these have some hefty side effects, but given that the alternative is to risk further damage up to and including blindness, it’s worth the risks.
The colitis is a more commonly understood problem, but it has been an issue for far longer. One one hand, he’s lucky that he does not have Crohn’s disease like his dad, but colitis is so disruptive when untreated that it powerfully affects quality of life. Moreover, it also greatly increases your risk for expensive and dangerous diseases like cancer when not properly kept in check. Now to me, this would indicate that it should me more cost-effective for insurance companies to have effective maintenance coverage of colitis to prevent increased risk for very bad things. What we have found is that despite having arguably some of the best insurance in the state (even with the annual erosion of coverage of the last several years), we struggled to find medication that treated his inflammation without costing almost half as much as our monthly house payment (out-of-pocket).
This has been an ongoing problem for at least two years. When he was first diagnosed, theyran all sorts of blood tests for enzymes levels and such to determine how well his colitis would respond to treatment. The hope was that they could knock the inflammation down to a low enough level that he may not have to take daily medication to live a normal life. (For those who don’t know, the difference between a normal daily routine for a normal person and someone with colitis, think about spending an additional hour or two in the bathroom each day. It really is not something you can ignore if you have moderate or worse bowel inflammation.) His physician found that he simply needed a base level of anti-inflammatory medication to keep him at decent levels. A lot of the older anti-inflammatory medications have more side effects than the newer ones and our insurance limited the medications they covered for colitis fairly severely. The doctor decided to put him on a drug with a coating designed to break down once it hit the pH ranges of his intestines as a way of directly targeting the problem as much as possible. (As an aside, I find this really cool. It’s a little strange to have a pill that doesn’t start to dissolve and make a mess if it gets damp. I’ve not tested it, but it seems like you could probably store these pills in water without problems. Chemistry is neat.)
When we first began filling these pills, it was toward the end of a calendar year and the cost to fill the monthly prescription was a fairly standard seeming co-pay. Then one January, he went to fill the prescription and they wanted us to pay the full cost (until our annual deductible kicked in, then just HALF the cost of the pills) of the medication in order to take home a month’s worth of pills. How much was the full price of those pills, you ask? At the time, it was over $600. But not to worry, once we hit our deductible, the cost for a single month’s supply of medication would be around $320 each month during that year. I’m sorry, but that’s just not a reasonable cost for a daily maintenance drug. I understand when drugs like chemotherapy are expensive (it sucks, but is time-limited usually), but this is basically a fancy aspirin with a fancier coating. It isn’t coated in gold or glowing magic; they are anti-inflammatory drugs that people often have to take every day of their remaining lives.
We didn’t know what to do. We asked for the help of the doctor’s office, and started trying to figure out how to go through any kind of medical necessity process to be able to afford to treat him. When I contacted our insurance company, I found that half the problem was that he was on the wrong version of one of their “preferred” drugs for colitis. His physician had decided that Thrack would probably rather take 6 horsepills a day instead of 12, so she wrote the script for “Asacol HD” instead of just “Asacol.” Both are mesalamine with the fancy coating, but one is double the dosage of the other. I understand the reasoning. Who wants to fill for a monthly dosage of pills in 2 pound bags? Filling for 180 pills at a time is better and easier than 360 at once. However, that’s only half the problem, as it was explained to me. You see, they have Asacol (400 mg) as one of their preferred drugs (and one of their only approved medications for colitis at all) if and only if you take just ONE pill daily.
When we let the doctor know this, she naturally was as horrified as we were. She let us know that in her view, that was a waste of a co-pay, since one 400 mg pill would treat absolutely nothing. Moreover, as far as our insurance was concerned, they DID cover his medication by picking up half the cost, so no amount of applications for mercy/medical necessity would convince them to pick up a larger portion of the cost of the drug. Now, at this point we were both angry, frustrated and depressed. To go from finally living like a normal person to facing a return to disruptive gastrointestinal misery was awful. I was angry at the insurance company for effectively not covering colitis (as we tried to find other options for treatment), I was angry at the drug manufacturer for basically scalping patients on price for fancy aspirin and I was angry at everyone who wanted me to feel fucking lucky for having “great” state health benefits.
Then the P.A. at the office called us with wonderful fucking news. The drug manufacturer was offering a patient savings card that would act as a secondary insurance, picking up the difference between a copy and $50. I felt like jumping up and down and wanted to hug her over the phone for finding a solution to our problem. Paying $50 for each month of treatment was absolutely wonderful. The card was good for 12 fills, so we knew it wasn’t permanent but hoped things would improve in another year. Things were great for us, Thrack’s medication was affordable, and they issued another card the following year that did the same thing until January 1st of this year.
Then we ran into problems again. They changed their card’s terms as of the beginning of this year to only knock $50 off the co-pay, so our financial burden went from something manageable to $275 each month. We started looking into the other drug that looked like a viable option, but we were somewhat nervous about it because it was an older drug with a bunch of known side-effects. Then yesterday when Thrack was talking to our insurance company, the person on the phone told him that they covered the 400 mg Asacol as a preferred drug with no dosage limits. This is actually very good news, but I’m hoping it is because they’ve changed their formulary guidelines this year. Because if this was true last year, that would mean they flat-out lied to me.
So now I’m cautiously optimistic about getting Thrack back on medication. He’s been off treatment for a while and is having a number of general inflammation issues as well as more iritis problems, so he’ll probably have to take predisone for a little while.