Thursday, October 25, 2012

Really Bad Mood

I am in a really really really bad mood. Ok so I know it has been WAY too long since my last blog, and that will change. You will see my blog updated a lot more often in the future. I do have a really good explanation, but now is not the time for that. Right now I am mad, really mad...

By now you know that I had a long battle with Xyrem and my insurance company trying to get my copay under control. What I haven't told you is that not, praise the Lord, it's $35 a month. In another blog I will go in to details about this, but today I am mad. Oh yeah I said that already, well here is why. I have told my neurologist how I battled to get my copay under control and because of this he referred a patient of his to me for help. I recieved an email from this man yesterday. He explained that he is 71yrs old, is on a fixed income, and can't afford the $1589 copay. Because of this he stopped taking the medication 6 months ago. He went on to explain how terrible his life has become from not sleeping for 6 months. He has become irritable, forgetful,and miserable. This is so disgusting to me I can't even explain! How can anyone allow this to happen? 

I emailed this gentlemen backed and told him I would love to help him. While I was looking up a grant program that I thought would help him, I ran across an article that angered me even more. This article explained how Jazz Pharmaceuticals upped the price of Xyrem 300% in 2010. Seriously!!??!! This company was on the brink of bankruptcy so they increased their prices and saved the company. In 2010 they said the per year price for the highest dose of Xyrem was only $35,000 and that wasn't anywhere near the ceiling they have put on price. A ceiling they came up with themselves mind you. 

I'm not putting up with this krap anymore, that's it I'm done. No more playing around, I won't stop fighting this company until every narcoleptic in this country has access to this drug at a reasonable price. I don't know how I'm going to accomplish this, but I'll figure it out.

I really hope someone is still reading this. I'm sorry I stopped for so long, and I promise I will explain. 
Please keep reading, please tell others, please. God Bless

BTW, I was wondering how anyone would feel about me doing a vlog instead of a blog. Please give me some feedback!!

Wednesday, April 6, 2011


Well....long time no blog, sorry. I have been crazy busy with all kinds of things, school, family, struggling to stay awake while driving...the usual. I am happy to admit however that I have been doing a wonderful job at staying awake lately! My Xyrem is really helping out, just like I knew it would. 

Speaking of Xyrem, I called to order some on Monday and to my suprise spent 45 minutes on the phone with the "Success" Program. For those of you who aren't versed in Xyrem speak, the "Success" Program is the program that runs the pharmacy that makes the medicine and subsequently ships it. I use the quotations around success because I have never seen these people be successful with anything. So back to the drama...I was on the phone with them for the longest time because they screwed up again and couldn't verify my insurance or my voucher program information. In english...they were trying to charge me $1500.00 again. Yeah, you're not surprised are you? Well neither was I, but the joke is on them because I was taking a nap while I was on  hold and that krap music they were playing lulled me in to it. When I woke up I felt quite refreshed and thankful for the respite. I was then ready to box with whomever picked up the phone next, however they had figured out the problem by that time and so I had to be nice. Well they didn't really figure it out. Actually they just decided that they would charge me the same as last month and if everything didn't pan out with the insurance they would charge my credit card for the balance.....gee thanks! It's always such fun dealing with those people. 

Ok I actually just fell asleep writing this! RIDICULOUS!! My own life puts me to sleep! But then again  everything puts me to sleep. 

So I was in my microbiology class yesterday and we were talking about genes and genetic engineering, and what is being done to research gene mutations and DNA related diseases. It reminded me that I have a disease that could seriously benefit from such research. In more than 90% of the cases of the type of Narcolepsy I have (Narcolepsy with Cataplexy) studies have shown a lack of 2 related brain chemicals. These chemicals are Hypocretin-1 and Hypocretin-2 . These chemicals are found only in the hypothalamus but can be tested for by having a lumbar puncture and retrieving some CSF (cereberospinal fluid). The testing of these things in Narcoleptics have given scientists the idea that something could be done to create a drug to help replace these chemicals. Narcoleptics currently only have drugs that were first created for someone else that has a different problem. We only have symptomatic drugs, that is drugs that treat our symptoms. This is why most people who know me have heard me say that I am tired of being artificially awake. The meds I take to stay awake are forcing me to stay awake, not fixing the reason that I fall asleep. We deserve our own meds!!! Without going in to great detail and losing you, I need to explain the blood-brain barrier. It is something that protects the brain inside the body in the same way the skull protects the brain from dangers outside the body. The skull can only be penetrated by certain objects, chainsaws, baseball bats, and the like. In the same way the blood brain barrier can only be penetrated by certain things. Medicines have to be formulated a certain way in order to be able to affect the brain. It is not easy to make drugs that can do this, and a drug to reverse the cause of Narcolepsy must be able to do it. (are ya bored yet?) All of this means that we need more research and more funding!! 

The amount of people that have this disease are many, the amount diagnosed are few. Breast cancer has a pink ribbion, AIDS has a red one. Everyone knows what malaria is and that Africans need mosquito nets, yet hardly anyone knows what Narcolepsy is. Malaria is preventable and there are drugs to combat and prevent it. Narcolepsy is not preventable, and we are constantly prescribed second hand drugs. We don't have a ribbon, a month, a race, or a famous person speaking on Capitol Hill. What we do have is real, life changing problems and we need help. A drug to reverse our problem is within reach but we need assistance. Please continue to tell others about this blog, ask them to read it and tell their friends. We need  to get the word out! I will never stop trying to get help for us, but I can't do it alone.

We need success, but aren't having any yet. One day we will. Keep reading, keep telling others...God Bless

Monday, February 14, 2011

You're Kidding Right??

Happy Valentines Day!!!  I hope everyone was able to stay awake to enjoy it. I am having my VD, um .....not really the best abbreviation....Valentines Day sans husband this year as he is in Libya. Booo. But my wonderful mother-in-law has been so gracious as to spend the day with me. Actually she has been babysitting me the past few days between the departure of my husband and the arrival of my Xyrem (should be tomorrow). We went and ate heart shaped sushi at the Bamboo Village so it was nice. Sorry I have been gone but as y'all know I have not been feeling well (hints the babysitter). I have been very busy all day long and I just know you are sitting on the edge of your seat waiting to know why. Ok suspense over.

First as y'all know I am in college...again...trying to become a nurse. I have two very big tests this week so I have been studying like mad. All day long I have been learning about the heart, how it functions, how it is sustained, how it receives blood. Appropriate for valentines day. It's very interesting because it is such a complex little organ but it is so small. All sorts of parts of the body have to work together to make it function. As I was learning all of this I was also calling my insurance company and my prescription company, and the Xyrem pharmacy, and then the insurance company, and the pharmacy and then the prescript....ok you get it. As I was doing all of this I was thinking how much energy I was using, emotionally, and physically compared with how much my heart has to do to keep me functioning. All I wanted was one little prescription and it took like 8 hours of my time today...not to mention the past few weeks of time. It takes one minute for all the blood to cycle through your body. I compare the two because if my heart stopped beating I would die, and If I continue without my drugs I will certainly die due to some sort of narcolepsy or cataplexy induced accident. But nobody looks at it that way. They just think I am disposable, I am a number, I am something they have to do while they are at work. Then they go home and go on with their day. But I actually am not disposable, I depend on my medication and so in turn I depend on these people to help me.

I am getting really tired of complaining but it seems that is all I can do at this point. I need to keep complaining and keep my fury, and remember that others are going through this too!

So today I called the insurance company...armed with a letter of medical necessity...ready to get my $1431 monthly co-pay reduced. I was maybe a little sure of myself while I dialed, cocky even. I was going to show these people that it is important and they are stupid and I do need this medicine.I was quickly informed that my letter (which I was told to get) meant nothing and my  insurance plan has a clause....seriously pay attention to the absurdity.....has a clause that no one may challenge a co-pay. You're kidding right? I said in complete disbelief. They weren't. I couldn't believe it...but that wasn't the last time I asked someone today if they were kidding. Five supervisors later I began to lose my cool and had to hang up the phone...I will finish this battle another day.

So if you have been reading my blogs you know that Jazz Pharmaceuticals has agreed to give me a $1200/month voucher so I only pay like $231/month (still too much since I take like 57 other drugs a month, but better). Well I called the pharmacy in Missouri to schedule a shipment and pay for my drugs. They received my new prescription on Friday so I had to wait for it to be processed. At 9:01 am I called to schedule my shipment, knowing that it had to be processed by 1:30pm today in order for me to get it tomorrow. I really needed to get it by tomorrow and knowing that they would find a way to screw it up I called early. Of course nothing was right, prescription wasn't filed and insurance company hadn't been called, and the voucher program wasn't applied to my account. I knew this would happen since they have given and then revoked this voucher before. I kid you not I called every hour on the hour trying to get it done by 1:30. At 1:25 (after having dealt with so much krap) I was informed that the co-pay, with voucher was $75. The heavens opened...little cherubs played their harps...and for just a minute I felt joy. I didn't even think I needed to wait for the other shoe to drop, well I did. The pharmacy called back 2 hours later to tell me they screwed up my dosage and I would be needing to pay the remainder of my $231 co-pay. Yup...that is when I said once more..."You're kidding right?" Yeah they weren't and they proceeded to drain my bank account.

Luckily I didn't freak out so much that I had a heart attack but I assure you that I came close. I just have to keep the fight up and keep awareness of this disease and get funding and such. This is after all the reason I am sharing all of this krap. Days like today...when I know you're reading and I know you care and maybe even are going through really helps. Thank you. Well I have to go study now. Please keep telling people to read the blog, and follow it. Please keep commenting and sending really is nice for me. But most of all keep reading and God Bless!!!

Thursday, February 10, 2011

Flat on my face

Well sorry I was gone yesterday...bad day!!! To say the least. I had some interesting conversations with Xyrem yesterday. Actually after speaking to a very rude person from Xyrem the representative that my Hubby emailed from Jazz called me back. They are working on getting some info to me about how much the price increase has gone up in recent years. My fight continues!!! They called again today and I will give you some good progress information when I get it.

The bad day yesterday actually rolled in to today too. Very bad. I had about 4 cataplexies yesterday and 8 today. I have hit my head so many times in the last two days that I can't even believe I am able to write this blog. It is just too important to me not to write. I am not sure if it is more cathartic for me to write this or if it will really help anyone. Sometimes it is just better for me to know someone is going through this too. It's hard, it's really hard living like this. Not having my medicine is devastating me. I fell flat on my face in microbiology today...of course it caused a giant ruckus...story of my life. I read somewhere today...some narcoleptic page somewhere...a woman say "please tell me it get's better than this". I wanted to tell her it does...I really wanted to tell her that but does it? Does it get better than being a 28yr old falling on her face in a room full of 18yr old first time college students? Make no mistake I am not graceful either so I am sure it looked like that episode of SNL where Chris Farley fell and shattered the coffee table into toothpicks. Then I realized it does get better. People adapt, we adapt, The 18yr olds don't really matter in the grand scheme of things, but actually for the rest of the semester they will know what to do...what it looks like...and how to carry on when I fall. My professor will adapt, and maybe next time she has a narcoleptic, cataplectic student she will react better. I will adapt! Every new environment I am in I will mold to fit my needs, I will mold myself to fit my every environment. It just takes time.

Gonna rest now! Please Keep reading and telling others to read! God Bless

Tuesday, February 8, 2011're tired??

Well, Day 2!!!! I have had one heck of a day, and tired doesn't even begin to explain it! For those of you reading (I hope there are people reading) who are narcoleptic, you know what it is like to be desperately tired! I have done so much in the past 24 hours and I am doing it all without the medicine I need to help me sleep at night!! Ok so maybe the 47 cups of coffee I had today may have helped a little bit, but I still fell asleep in class like 5 times! I have talked to Tower Life (my insurance company) 4 times, Express Scripts (prescription insurer) 5 times, The Xyrem Success Program (pharmacy that provides my medicine) 5 times as well. Not to mention how many different people I have talked to each time I made a call. I am happy however to report some progress!

Progression #1) Hubbymail- Yes the email my husband sent to the corporate hq's at Jazz  Pharmaceuticals (Jazz)  was responded to!!!!!!!!!!! Actually someone from the company tried to call me, but I was busy sleeping through my microbiology class. No problem though because they emailed the hubby and said they would call back.

Progression #2) Narco Nannattack- So I called the pharmacy branch of Jazz, which is called the Success Program. I complained about my high co-pay ($1400/month). After a bit of haggling with them they told me about a voucher program which is $1200 a month. This means if your co-pay is less than $1200 then you pay $75 and Jazz eats the rest. Or in my case you pay whatever the price is over $1200. So I will actually pay somewhere around $200/mo for my Xyrem. This is a bit of a win for now, however it's not a fix-all. This company is gouging my insurance company for as much as they can get and then in an attempt to keep my business they are helping me.
          PROBLEM: Jazz has increased the price of the drug Xyrem four fold since the med was approved by the FDA. Now the average cost per patient per Jazz record is $45,00/year and they say that they will still be able to double that yearly cost before they reach the ceiling they have developed for themselves. SERIOUSLY???? What will soon happen is the insurance companies will get tired of being gouged by Jazz and they will stop covering this medicine. Many narco's like me have had to go off of this medicine for periods of time because they can't afford it. Last year the voucher was $500 and my co-pay was $1000, so I wound up paying about $512/month. This shows you how much they have increased the price in a year. (Jazz claims it was increased 22% in Nov.) The government has given Jazz the monopoly on this medicine (without price cap) until about 2024. I fear by then it will be too late and prices will be so high no one will be able to afford it.
        SOLUTION: Get the government to de-regulate the way this medicine is provided. Yes it is a very dangerous drug and needs some regulation but this is ridiculous! Today my sister-in-law and mother-in-law joined the fight and are writing their representatives. The word needs to get out and I need help!!! Please tell others! The more people I get to follow my blog, the more clout I have. Narcoleptic or not I need followers!!! Tell your friends and family!

I gotta go sleep now
Please keep reading...please keep spreading the word!! God Bless

Monday, February 7, 2011

Happy and Mad!

Ok so it's my first blog!!!! Hooray! Well sort of hooray. It's a giant step for me in the fight against the horrible government over-regulation of health care. I didn't know when Obamacare was passed exactly how it was going to affect me, or whether it would affect me or not. I am still not sure since the whole plan hasn't begun yet if it will be worse for me personally than things are currently. All I do know is that government regulation is giving me a headache...literally, and I HAVE to do something. I need to back up a little bit though...this is not a "political" blog, although I am a very politically minded person. This blog is about fixing gaps in knowledge about how government regulation of health care is devastating peoples lives, and finding funding for research. Also to increase knowledge about a disease that makes normal life next to impossible! Oh hey...the Green Bay Packers are world champions! Had to throw that in there, I am a HUGE fan. So I guess in this very lengthy first blog I need to explain what I am doing here. I won't get it all in today, but I will along the way! Google Narcolepsy with Cataplexy if you don't know what it is. The easiest explanation is I am tired 100% of the time (narcolepsy) and I fall down and hit the ground multiple times a day (cataplexy) breaking bones and getting concussions all the time. The falling is due to a lack of muscle tone that I have when my awake self thinks I am asleep (a problem in my brain) and paralyzes my muscles. This is something the brain does to stop you from sleep walking...etc. I was diagnosed 8 years ago with these problems and have been to doctors all over the place. Finally I was prescribed a drug (Xyrem) that turned my life around! I am on MANY drugs everyday but this one took me from falling down 6 times a day to falling down 3 times a week. This medicine also made me sleep at night, this was bliss. When I started taking this medicine it cost me around $300 a month. Big deal...that was well worth it. Then it went to $500...ok more expensive but manageable. Then $1000 a month...mind you this IS my out of pocket per month.... that was painful Now it's $1400....this is a freakin mortgage payment! Are you kidding me? I have been off of this medicine for a bit of time now because I can't afford it. This is of great determent to my life. I am in college (3rd try now due to my health) trying to become a nurse to help others like me and I am not doing well because I can't stay awake in class. This is disgusting and I am not not the only person with this...many many others are suffering from price problems and can't get their medicine. All I can say is it is due to government me on this! I will explain more tomorrow and show you proof. In the interest of not writing a novel today...I will wait. This weekend my husband sent emails to Glenn Beck, and Bill O'Reilly looking for a platform to get our message out. I have sent emails to congressmen and women to ask for help. Even my wonderful brother-in-law is in on the fight, emailing his representatives in Iowa. I have a wonderful, loving family who always support me and pray for me daily. We will get this done, we will get more research done, we will get co-pays reduced and we will bring awareness to these diseases! Ok well I think this is good for today...I am going back to emailing people to help me. Please keep reading and tell others to read!! God Bless