I have narcolepsy with cataplexy. There is ONLY ONE medication that gives us the restorative sleep we don’t get due to this disorder, it’s called Xyrem. I have been fighting with Medicaid since December 1st, 2012. They are denying it for 2 reasons. The first one is because 30 years ago I had a problem with self-medicating and taking amphetamines. This was 30 years ago and I have been clean since. The other reason is because I take pain medication for other medical issues. They say I can’t take the Xyrem along with the pain medications. Before I had to resign from my job and was on my employers insurance I took Xyrem for 6 months along with these pain meds. I had NO adverse effects. I did just fine on them. Today I had to put my 16 year old special needs son in foster care because Medicaid will NOT approve this Xyrem for me. My doctor has sent everything to them supporting the fact that I don’t have a drug problem and that I have already taken Xyrem along with the pain meds. They continue to deny. Today my doctor called Medicaid and was told there was nothing more they would do, it was the end of the road, they would NOT approve. Without this medication I cannot take care of my son. I WANT MY SON HOME WITH ME. I NEED MY SON HOME WITH ME. PLEASE SIGN MY PETITION AND HELP ME GET MY MEDS SO I CAN GET MY BABY HOME. I AM DYING INSIDE WITHOUT HIM HOME!!
I have reached my goal of 500 for the Medicaid appeal. I now am trying to get 1000 signers so I can send them to the President and any other politician that I can find email addresses too.
- Director of DHS
- President of the United States
- Iowa State Senate
- Iowa State House
- U.S. Senate
- U.S. House of Representatives
- Iowa Governor
I am writing to you because I have severe narcolepsy w/cataplexy and Medicaid has been denying the ONLY medication that has helped me stay awake.
Medicaid and insurance companies have too much control in approving and denying medically necessary medications. Medicaid has been denying my medically necessary medication, Xyrem, for 6 months now. Because of this I am very ill and had to place my special needs son in someone elses care. His respite providers, who are also foster parents agreed to take him. I was told by my nurse, case manager, and other workers that if I didn't find some place for my son to stay DHS would open a case on me and remove him and place him in foster care. He has Asperger's Syndrome and Bipolar. He is with people he knows but they can only keep him until the middle of July. If I don't get better by then he will be placed in the foster care system. This is very detrimental to him being autistic. He is very depressed and not doing well at all right now.
The practices and red tape that Medicaid and private insurances use to approve and deny medically necessary medications has got to be looked into.
They are denying my medication because 30 YEARS AGO when I was a teenager I used illegal amphetamines. I have not abused this drug in 30 years. The other reason they are denying is because they say the medication I am trying to get approved canNOT be taken with my other medications. From July 2012 to November 2012 I successfully took Xyrem with all my other medications with NO ADVERSE AFFECTS. I was on private insurance then and none of these issues came up. My sleep doctor has sent them evidence of all of this but they are still saying they won't approve.
I received a letter from Charles Palmer, Director of DHS last week. There were 3 stipulations in there that had to be met before they will approve the Xyrem.
The first one was that I would have to prove that my "drug addiction" is stable. My sleep doctor has provided this proof. I do NOT have a drug addiction issue. I have been CLEAN FOR 30 YEARS.
The second stipulation was that I needed to have current PSG, MSLT, AND ESS. These are all test to prove I have narcolepsy. I was tested in May of 2010. For me to have another round of test done I would have to go off all my other medications for at least 2 weeks. I have severe bipolar I disorder, degenerative disc disorder, arthritis, and anxiety disorder. My sleep doctor has repeatedly told Medicaid that it would be severely detrimental to my health to take me off all my meds and be retested. He advised that doing another test wasn't going to show anything more, I have narcolepsy and that is all more testing is going to show.
The third stipulation was that they would approve the Xyrem if I agreed to go off all the rest of my medications that they say I shouldn't take with the Xyrem. Those medications are my pain meds for the degenerative disc, arthritis, and anxiety disorder. This is LUDICROUS to even ask me to do this. I would be just as nonfunctional without those medications as I am now without the Xyrem.
Medicaid has denied this at least 6 times in the last 6 months. Each time for a different reason.. It is believed they are refusing to approve it not because of my health and what other meds might do, and not because of my prior drug issues but because they don't want to pay the outrageous cost of $9000 a month.
THAT is another issue. Jazz Pharmaceuticals just keep raising the cost of this. There is NO way anyone can afford this on their own. When I started taking it in June of 2012 it was around $6000 a month. Now it is close to $9000., before the year is up it is going to be more than $10,000 a month. THIS TOO HAS GOT TO BE LOOKED INTO AND STOPPED.
I apologize for the long letter but it is imperative that you understand what Medicaid's practices by pencil pushers are doing to my life and the lives of thousands of others. Why and how is it that Medicaid's red tape and pencil pushers can override what my doctor says is the only medication that allows me to live somewhat of a functional life.? Xyrem IS THE ONLY MEDICATION THAT HELPS PEOPLE LIKE ME WITH SEVERE NARCOLEPSY.
PLEASE HELP ME GET THESE RULES CHANGED AND TO CUT THROUGH THIS RED TAPE.
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