First-if you are the grammar and spelling police...you will hate me, but I blame obamacare! read on! LOL
Did you catch that headline? If you follow along on this blog journey (of a mess) of mine..then you'll recall that I commented way back when Obamacare/affordable care act was passed that I was scared that one day I'd be denied. I also had a "healthy 20 something" comment on facebook how wrong I was and I how fortunate we were that we'd never be denied healthcare. Well, I did delete said "healthy 20 something" because I couldn't take his ignorant comments anymore, but yea...here we are..I'm right and yes, you're still ignorant.
OK--I might not be denied "purchasing insurance" but that's not "healthcare". Let's get this right folks. We are now FORCED to buy a piece of paper that's..useless. I had good "healthcare" until obamacare came along. I had good healthcare until all the changes. My husband works for a small family owned business who now suffers greatly because of all the "change" that obamacare made. And "affordable"...really??!! We now have an individual deductible of $3000.00 that you have to meet first (this isn't doctors copays). His company pays THOUSANDS a month for insurance...what??!!! Welcome to America family friendly owned businesses--PAY UP or be fined! So, thankful for this business that does pay up for my family, but what about those that close down because they now can't afford it.
Let's get to how I'm being denied healthcare--again, I do not think healthcare is an insurance policy. If you do, then stop reading now because we will just need to agree to disagree. My doctor wanted me to go on acthar which is an older drug, but really my last resort. I've failed all other TNFs for my ankylosing spondylitis and iritis. Acthar would be a different class of drug and we were hoping this would help with my disease. If this is your 1st time reading my blog and you just went what's that..then please go back and read or google it (but probably most info you read on line will need updating-not always accurate with a disease that's on the "back-burner"). I found out that my first injection of acthar was going to cost me over $8000.00 WITH insurance and my rheumy wanted me to inject 2x a week..wait...WHAT??!!! OK--even if the insurance approved this, how could ANYONE afford this?! My 1st thinking..oh, well..that's the end of that--then talking further with the acthar rep, I was informed that if my insurance denied the medication, I would go into a support program and possibly get the drug for FREE. Well, hallelujah! Because that was the only way I'd get it. The insurance did DENY the medication--FOLKS DENIED HEALTHCARE! My insurance-Coventry-sent me a letter that read, "denied because it was NOT medically necessary" umm, what?! I just LOL'd typing that. I have a disease with NO CURE and am failing all drugs that are AS approved, this one IS AS approved and it's not medically necessary. Hmmm OK?!
Well, not that I minded that stupid letter, because I couldn't afford the medication in the 1st place WITH insurance. So, on to the FREE meds--the lady calls me from the acthar assistance support line and says she'd like to "pre-qualify" me and ask me questions about my HUSBANDS income. I can't work because of the disease. Why does my husbands job/salary matter here? Why am I being punished for my husband actually having a JOB and supporting his family? I think you know where I'm going here. He makes too much...what??? Really...so, our modest living, paying for all my doctors visits, medications, our daughters college, living check by check, like most Americans...we don't qualify. BECAUSE HE WORKS AND HAS A JOB! ahhh so angry typing that. DENIED HEALTHCARE...WELCOME TO AMERICA! I feel like I just filled out the stupid FAFSA..ugh! Penalized for working and supporting your family..got no job and get it free...yup, it just typed that! Let me back up and tell you that when the lady that "pre-qualified" me, asked when doing the "pre" qualifying..nothing about expenses..nothing. Just asked what hubby's salary was and then said, you're denied. Now, they are saying I can do an appeal--send them a letter saying why I need the medication, proof of salary (really you already asked that), all my medical bills for 2014 and the list goes on and on....really...SMH!!!! Let's make it easy for a sick person...ugh and the letter of "necessity"....I just want to inject myself with a drug 2x a week just because...really...ugh..SMH!
Where does this leave me...having a disease with NO CURE. Living in constant pain as my body destroys itself from the inside, currently on no medication to stop the progression of my AS. So, for now, we are going back to the last TNF I was on, simponi. I was on the injections but saw no improvement. We are going to the IV infusions-simponiARIA. For those of you that are close to me, you know that the name of this drug is enough reason for me to even want to give it a go. I am a Jesus lover and truly believe that God's in control not anyone else. I've given this horrible disease to Him. But..am I loving that "aria" name in this drug...YOU BET! If you don't know me, it's my oldest daughters name! So, for now, I'm praying that my insurance won't deny me "healthcare" and will approve this medication, but more importantly, I'm praying that it will work! It's the last TNF that is AS approved for me--been through them all. Also, praying that more education and awareness will come for ankylosing spondylitis. That information will be corrected that's out there--that's wrong. Even saw it at the rheumy this week on a poster. It had several types of "diseases" listed and ankylosing spondylitis was on there, very small in corner, only 4 things listed and the last said, "predominantly affects men". It was all I could do not to pull out a pen and scratch through that comment and put it's 50/50. We MUST get correct education and knowledge out. We need more medication approved for AS. but for now....
AS has my body, but NOT me!!!