What's my situation? I quit working at the end of March due to my Behcet's symptoms worsening. I lost my health insurance in July. I don't qualify for MN Care until November 1st. I say qualify but it's more like I can't even apply to get it until November 1st as you need to be without insurance for a minimum of 4 months. There's no guarantee I will get it since I get a small amount of money from long term disability through my work which is something I paid for when I was first hired with Allina. I have Allina Partners Care right now, which is not health insurance but it allows me to see doctors at the Allina Clinics and not be billed for the office visit. This will expire November 30th. So why am I complaining right? I have no prescription insurance, so I have to pay out of pocket for medications. I currently have 4 medications I am waiting for approval (through Allina prescription assistance program), which a fairly long process as my worker through Allina needs to send it to my doctor, to me, and then contact each drug company that manufactures the medication. Then of course it needs to be approved through them and sent to me. So I am waiting for the approval of a medication that may help me get better. What are the chances I will go into remission on my own? Extremely rare. I have never heard of it without meds. I've heard some people have a relief of their symptoms while pregnant but it returns after the pregnancy. So how am I suppose to get better without these meds? Do you have any idea how expensive it is for medications without insurance? I ask that next time you get your medications filled ask the pharmacy how much it costs for your medications without insurance. They will be more than happy to give you a quote. Now keep in mind if you had my disease, you are looking at around $2,000 for most medications used to treat the disease. Or I should say a main medication to treat it- the injectables specifically. So add that to your bill. Keep in mind most people with Behcet's are on multiple meds to manage the disease- usually an oral or two along with an injectable or IV med but each situation is different with Behcet's.
Now I challenge you to prioritize what medications you can pay for out of pocket- what do you need to most to get through the day- is it blood pressure pills, pain pills, heart medications, birth control?- while still managing to pay your rent and what other bills you have. You have to decide whether or not food and rent is more important than your medications. Think I'm joking? This is a real situation for many people. But we don't need the government giving us help or allowing insurance for everyone right? For those of you who think healthcare isn't a "right" for everyone, I honestly hope you are placed in my situation or something similar. Your mind will be changed very quickly once you have to decide medication, food, clothes for your children, etc.
Think about those who have no long term disability or their clinics don't offer something like Allina Partners Care. What if it was your grandmother, grandfather, mom, dad, or child who was in this position? Would you still think the way you do?
Alright, enough about health care. I saw my neurologist yesterday. She is the best! She was shocked at the amount of shit I've been dealing with since I last saw her. She agreed I did the right thing starting the butterbur and not doing the botox. Her words were something along the lines of "I agree with the botox decision. When you think about it how many people with Behcet's do you think have had botox and we have no idea how you'd react to it. How many studies have they done on it? Plus I've heard it's painful." She didn't scold me for not starting the gluten free diet, in fact she says I have enough on my plate so let's wait until I can handle it. She wants me to see a TMJ specialist to see if that's why my temporal headaches are so bad. Problem with that is I have no dental insurance and cannot go outside of Allina for medical without paying out of pocket. There's something else to think about: what would you do with no dental? It's already ridiculous enough for dental work but what if you need something like a root canal or crown? Any idea how much it cost? I can tell you because I've had to deal with it. Let's start with a quote I got for a basic filling to get done- I had a filling fall out a week ago and was quote $185 to replace it. Root canals are around $400-600. Crowns are around $900-1000. So add that to your bills too.
UPDATE: I just found out from a fellow BD'er how much remicade costs a month. Go on, take a guess. It's every 2 weeks IV medication. Drum roll please... $16,000! By the way, those of you who think that if you have insurance or rx assistance card you should be able to afford your meds- not everyone. Why? Because not all are generic, not all insurance cover meds completely, not all rx assistance lowers them enough to be affordable- especially when you have a family to take care of and there is only one income coming in. So please before you say hateful comments or assume things, wake up and realize we are NOT in a perfect world.
A random thing I've been thinking about lately is how long I've truly been sick. Looking back some of my symptoms started way back in 2008, possibly even 2007. But I'll talk about that in another post:)
I want you to take a look at my medication list. These are the medications I am on or should be on currently to help manage my disease, aside from the birth control (which is $22 for each pack which lasts me 3 weeks). All of these I need to either manage BD itself or the complications I get from it.
percocet (pain)
sanctura (urinary)
kineret (Main med for BD)
ginger root (nausea)
butterbur (Migraines)
piroxicam (pain)
lyrica (pain)
flexeril (muscle relaxer)
hydroxyzine (nausea)
fish oil (for BD- this is good for any inflammatory disease)
omeprazole (I get heartburn from some medications)
diflucan (for chronic yeast infections- topical and vaginal due to the BD)
vitamin D 2,000 IU daily (mine is low due to active BD)
vitamin B injections monthly (mine is on the lower end of normal, unsure if it's from BD or not)
magic mouth wash (for mouth sores/inflammation)
albuterol inhaler (for when I get sick with an URI or when I'm around cigarette smoke, same with the nebs)
albuterol nebs
nystatin powder (for topical yeast infections due to BD)
compazine (nausea)
loestrin (BCP)
triamcinolone cream (for mouth/vaginal ulcers)
stool softners (due to narcs)
claritin (for allergies, not BD but it's another cost)
You know what's scary? My allergy list is almost as big as my medication list. I am now officially at 17 allergies/intolerance's. Wow, huh?! Anyways, I hope you take this to mind when you think about whether healthcare is a basic human right. Why? Because it may be you some day in this position.
"So long as we have enough people in this country willing to fight for their rights, we'll be called a democracy." ~Roger Nash Baldwin
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