When one has a disease and the entity which one depends on suddenly cuts the needed treatments in half, one has to become adept at adapting to managing the symptoms.
Carcinoid, as all how have it all know, is all about the symptoms.
First and foremost, how do we take care of the numerous and explosive bowel movement problem. Well, morphine is pretty good at this, and if one is not careful, one can become constipated if one is not careful. Well, I reached the verge of this and discovered there are numerous self treatments to make sure I never feel like a torpedo is in the tube, but it's unable to fire. I won't go into the details, but at least I've found a way to half way relieve that. Only problem with this is now my wife won't let me drive and everyone thinks that I'm really funny. I walk about feeling kind of goofy, and my wife refuses to allow me to go out in public since I went out the other day in my house shoes and walked around town visiting with everyone for a few hours. Luckily, I can blame that on the Morphine.
Second, fortunately there is a short acting version of the drug I need, and it costs like $900 a bottle. I am trying to ride the very edge of what is needed to keep things under control, and I still feel like I'm shooting up every time I turn around. Usually, I have to give myself a shot when I flush, now I'm having to take it in a more regimented fashion. I have a small supply, but when that runs out I'm going to fall into the donut hole very quickly. The problem with the part D donut hole is you fall in but climbing out is very difficult.
Let's add to this another difficulty. Seem I went and was tested for a certain kind of disorder which can be controlled with medication. Seems like when I was tested, usually one is told "we think you have it" or "It's highly likely you have it" I was told I broke the machine. So now I've had to start on a new medication which is causing some new and interesting symptoms on top of everything else I have going on. However, the medication is working and I'm finding life is a bit easier because I've been able to function at a higher level and actually get things accomplished, something I've not been good at seems like forever.
I am now in a holding pattern. My Senators all have signed releases and the gory details, as well as my Congressman. I am waking every day praying we get this taken care of so I can get back to feeling just sick instead of sick with all this other stuff going on. I am just so mad at this system. I'm mad because I trusted the system to not change, and I feel like the rug was pulled right out from under me. I'm all for saving the government money, and you might be a person who is actually happy maybe I'm cut off (though I wouldn't wish this on my worst enemy) but there is a question that I'm wondering about.
You see, the amount of money I've seen in a few places for people like me to go to the ER is in the $7,000 range for a visit. I actually was contemplating at a point this week going to the ER because I was in so much pain from the lack of the drug. So I'm just doing a little math here that if I have to make an ER visit, isn't Medicare actually paying MORE than if they paid the $2,000 for the shot? (Yep, I get charged double, I don't have the clout they do, so if I want it I have to write a check that will bounce for $4k.) Where is the logic in that? Is there some guy sitting in Washington with a chair connected to a something he gives himself a pat on the back, I guess if you cut off a thousand of us, you save the program like 2 million dollars. But then, you spend 7 million for ER visits, not to mention those of us who will opt for treatments at like $20 to $60k for a complete hospital visit. So, Mr. Washington, where is the savings there. Save a dollar, kill a person, but believe me you'll see all of us trying every thing we can to stay alive and that will just bury any savings you have.
What else I learned was the reasoning behind the logic is based on one study done in 1999 and another done in 2003. The second study involved under 30 patients, and it's funny, but even the studiers concluded that more of the medication was probably needed. Duh!?! I wonder if there is a study out there showing there is a single medication available a body doesn't acclimate to and the doctor has to give the patient more. Every medication I've ever been on has to eventually be increased until we reach a level that we have to find a replacement and start the cycle all over again. Or, I wonder if there is a study of a study which proves that these studies are all just some giant hamster wheel to keep scientists busy, the FDA in paperwork, and patients suffering. Did you know there is another drug, cheaper, called Lanreotide which is approved in Europe - has been used for years - but is not available here? Why? No study I guess.
While I complain, there is another side to this argument that when patients who got drugs which were not tested well enough started dying like flies, well, you know what happened. It's too bad, because when stuff like this happens, the dial swings all the way over to the side preventing useful drugs be released. But for me, hey, I'm a terminal Cancer patient and I really don't give a rat's you know what that the drug could cause me to have some problem. I'm dyin' here. (and that's not a joke or punchline) I mean it literally.
Soon, we are going to have a call in day and I hope to get a lot of people to call in and ask for this problem to be resolved. For those of you who are on this and not having a problem, if this stands it will be used as a means to deny you next. And for those of you on private insurance, you will be next. Scare tactics? Not according to my Oncologist who is telling me there is an entire movement now to deny patients access to the useful levels of drugs.
I am not a socialist, but I'm beginning to see why there should not be a profit incentive with medicine. We are the only country in the Western World who does not provide health care for it's citizens. I find it hilarious the general population actually fell for the media campaign put on by the profit making entities to convince us this approach is bad. I guess we are getting what we asked for. Go take a look at what your company makes and what it takes to run it. Huge buildings, lots of staff, profits, bonuses, travel, paying doctors, just go on and on and imagine that money being plowed right into our care. There would be not health care crisis. We'd all be covered and those of us who are sick could focus on getting well instead of fighting these stupid and stressful battles.
Well, time to take some more morphine.
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