Well, I am no longer taking the medication that I grumbled about in the last post. It was just too much for my system. That means I have flunked every intervention for my Mixed Connective Tissue Disease/ Lupus except the entrance level drug I have been on for years and short bursts of prednisone which are bad for me on many levels.
My rheumatologist wants me to increase the infusions of Immunoglobulin (Igg) )that I take subcutaneously every two weeks. In principle I think this might be OK. I mean, the stuff always makes me feel better after I go through the first 24 hours following the infusion. The first 24 hours can be a little iffy. I get headachy and maybe a low grade fever. This is normal due to the fact that I am infusing myself with other people’s plasma and immune “goblins.” My body thinks they are foreign invaders and reacts to the threat. After that, I generally get a nice surge of energy. I also feel that energy wane the closer I get to my next infusion. So, all in all, more or more often might not be too bad.
However, there is a problem. The problem has nothing to do with me or my health: It has to do with insurance. The treatments are wildly expensive. I think each time I order two doses, so a month’s worth, which includes medication plus supplies, it costs in the neighborhood of $15,000. You can add that up by 12 months a year and see why the insurance company would rather I just… you know… die.
So many questions come up here: Why is the cost so high for a treatment that has literally been around for thirty years? I mean, different drug companies mix it differently and that does make a difference, but generally it is the same thing. Also, why have the copays shot up in the last couple of years? I have a copay program through the manufacturer that helps pay the cost that is left over after the insurance and before my deductible is eaten up. That price used to be $150. It increased to $250 and stayed there for a few years. This year, I have found out that it is now over $2000.
So, my husband has switched jobs twice this year and in addition to that his company was sold. Therefore we have had three different insurance companies. For most people this is no big deal. For me it is a nightmare. I have been on the phone, daily, for two weeks, trying to get my medication ordered and approved. I have to go through: my immunologist, the specialty pharmacy, and my insurance company. There is someone either lacking information or stonewalling me at two of those three places at pretty much every turn. We have been on vacation this week but it doesn’t matter. I spend an hour or more trying to advocate for myself or I will go without and I will get sick and have pneumonia again.
After so many rounds of this shit I start to feel dehumanized. No one seems to have the same fucking answer twice. My immunologist is great. They have called and answered question after question and tried to resolve things and then I will call the next day to try and order only to be told it is not approved because there are more questions. At this point, it is pretty obvious I am going to go without my medication. Today I called the specialty pharmacy, doctor and the copay people. I am asking the copay (the manufacturer) to send me a one time dose of medication until all of this gets sorted; again. Guess what? They have to think about it and it’s a Friday: Fuck me.
I consider myself pretty battle worn and tough at this point but this has gotten to me. I cried this morning.
We are on vacation in the desert and there is no way a UPS truck can find us so on the lucky chance SOMEONE provides my medication next week (I brought all the leftover supplies I need to do the infusion.) I have arranged to have it delivered to a local pharmacy. I mean, I have done all the foot work and then some. COME ON!
This all boils down to one thing: GREED!
The American medical system is broken. It is not in the process of breaking; it is already broken. We are screwed, folks. If I were: elderly, sick(er), less obnoxious, whatever, I have NO idea when I would get my medication at all. This is life saving stuff. No one should have to fight for it. It is the same as people going off of chemo and just dying when their insurance says they are out of money and too bad.
I have lived in a European country that had “socialized” medicine. Guess what? IT WAS GREAT. As a student, I paid a few dollars worth a semester and saw the doctor for free and paid about $5 for a prescription. A professional, already earning a salary, would pay more. When I asked a friend what she thought of that she said, “I pay more and you pay more later. That is how society advances and we take care of one another in a humane fashion.” Oh, and by the way, the doctors were all well trained and competent and easy to get in to see and made house calls if you were contagious!
Wow. How civilized. We are supposedly a “Christian” country. There is a lot wrong with that idea but for one thing, it’s wrong. We aren’t the least bit willing to care for our fellow being. Instead we have created a system that thrives on greed and gloats at death and that resists reform because the people that benefit from it are paying the people who pass the laws and preach “Individual freedom.”
Sorry but you can tell that I am mad. I am really angry.
We ate at a restaurant in Kanab, Utah today. Our waitress looked about 40, I think. It was hard to tell because she was in desperate need of medical care. The poor woman had no teeth and had not had them for some time because her jaw was severely caved in. On top of that, she had on a wig to cover up her baldness. All of that combined with a shocking amount of make up, which was well intentioned, made me think, “Why can’t she get what she needs? This is stupid.”
Do you think a waitress has dental insurance? No. Even if she does, dental no longer pays very much at all.
What can we do about it? Vote. I guess that is it.
It is hard to do much else. I mean, I belong to a group that advocates for people with rare immune diseases and that lobbies in Washington, D.C. but as we all know, not much happens there anymore.
It is depressing.
The only way to live with it is to do what I do and just live day to day in the best way I know how. I hope I get my medicine before too much time passes. If I don’t, well, I will start to run down, like my energizer batteries will wind down. I will just cross that bridge when I have to. Between now and then I will keep making difficult phone calls…EVERY DAY. Hopefully all of these places and people will get so sick and tired of me that they will relent!
However, I do know that the people that answer the phones are often the ones with little power to make things happen. That is just the way of things.
Or, as one of my heros says, “This is the Way.”
Indeed it is, Mando.