The Price of Being Healthy

It has been an emotional day. I feel emotionally run down and, to be honest, angry.

I decided that I wanted to give a true shot at trying to get the price of my Lamotrigine ER lowered. Sometimes, if a medication is medically necessary, the insurance company can work out an affordable price for the patient. I thought considering I have to take an anticonvulsant for the rest of my life and I originally tried the non-ER version of the medication that I had a solid case.

First, I called the medication manufacturer, Par Pharmaceuticals. Many pharmaceutical companies have assistance programs because they want people to be able to afford their medication. They have a vested interest in whether or not you are continuing to take their products. Unfortunately, there is no such program for Lamotrigine ER.

At the suggestion of a friend, I called the insurance company directly to inquire on coverage since it is medically necessary. The first customer service rep was understanding and transferred me to someone in the pre-cert program in order to negotiate. The lady she transferred me to from minute one was defensive and rude. She also flat out lied to me. She said the insurance company has no control over the amount covered for a prescription - that the prescription manufacturer tells the insurance company what they want them to pay.

Not true. Manufacturer sets retail price to make back their money on research, patent and distribution. Insurance company negotiates the amount they cover.

I was so angry I practically hung up on her.

There are many patient assistance programs out there but they all have income requirements. If you are above them, then you don't qualify for the help. I don't understand that concept at all. Just because someone makes a decent living doesn't mean they can afford a medication that is $1000/month. That's insane. Plus, if a medication is treating a chronic condition, that probably means that there a lot of other bills to pay, as well.

I called my neuro's office to ask if they knew if any assistance programs that don't have income requirements. Nurse Gary told me that their practice has an assistance program but he doesn't know if there is an income requirement. He seemed absolutely stunned by the fact that I paid $675 last month for a 30-day supply. I am going to call the office after work tomorrow and inquire about it.

Also, Dave's company has a third party handle their benefits. I emailed the account manager and she told me to call her tomorrow so we can try and figure something out. I have a feeling though that my options are pretty limited and it is going to come down to what Dr. L's office says. I really don't want to switch back my medication, but I also really don't want to pay this much for something that is keeping me safe. That's unfair. I'm not even looking for complete coverage, just enough to take the edge off. I was thinking in between $350 and $400. I don't think that's incredibly unreasonable. I just don't want to keep feeling this extreme sense of guilt over the medicine being so expensive. I know that Dave reassures me that we will be fine (and I'm sure we will be), it doesn't take the sting of the price away. I hate the fact that I put our family in this position. I will do anything to take some of the burden away. I will talk to EVERYONE I have to in order to help.

I will post tomorrow after talking to both my doctor's office and the account manager.

Trough level #2

I'm currently sitting at Quest Diagnostics. After changing my dosage to 200 mg 2x/daily, she wants to make sure that the medication is therapeutic at a safe level.

Last time I got a Lamotrigine level done it was a 3.8 and it is supposed to be between 4 and 16 mcg/ml (I learned that the measurement is micrograms of medication per milliliter of blood).

I've been on the 200 mg for just about a month (it will be a month after this weekend) and on the extended-release since February 7.

I'm curious if being on the extended-release is going keep my trough level lower since the medication isn't being released all at once. I'm really hoping to be over that 4 mcg/ml mark. I would really like not to raise my dosage again. The amount of nausea I have now is no where close to where it was before and I don't want to give my stomach a reason to be angry with me, again.

They should have the results of my trough level by Wednesday or Thursday. My appointment with Dr. Liew is two weeks from today, so I'm giving them plenty of time to access what the next step is.

I can't believe how close to the finish line we are. We are done the medication transition and (hopefully) figuring out where my levels need to be at. The only thing I'm wondering is that since we switched me to the extended-release, is she going to ask us to wait another month before trying to conceive, since I'll only have been on the extended-release one month at the time of my appointment with her. I'm okay with that though. I understand that it is all about timing in our case.

My phlebotomist at Quest knows my story and said she was sprinkling "Quest Fairy Dust" on my blood work that everything will come back okay so that I would have no more changes. Lets hope it works :)

Pain in the...

...head.

Yesterday, while I was at work, I got the most blinding migraine I've had in months.

Like a lot of people, I get auras with my migraines. They are annoying. Really annoying. With my really bad migraines the light takes over my entire left side of my vision field. That's what happened yesterday.

Suddenly, I became very disjointed and it was hard to see. It almost felt like I was blacking out. I sat down and before I knew it, my boss brought me a Diet Coke (he knows I get bad migraines and the caffeine releases the tension in your brain).

After sitting and drinking a bit of soda, the auras went away but were followed by a horrible headache that felt like I was punched in the face. Accompanied by the fact that I got sick a few times, I was miserable and ordered to stay in the fitting room at work and relax.

My neurologist knows about my migraines and told me that according to the MRI, my migraines aren't neurological. It is just something really annoying that happens to me. It doesn't happen often enough for me to want medication like Maxalt. I refuse to take more medication than is necessary.

Anyway, that was my day yesterday. Another day in the life of me, I guess. However, I'm going to talk to my boss today because I'm pretty sure I scared the crap out of him yesterday.

We are... Doing it for the kids!

I apologize for the lack of posting, the past week has been insane for me and there was just no time. Between my crazy work hours lately and going to CT this weekend, I'm exhausted and want to spend the next couple of days in bed. Too bad I'm working at 3pm today until close.

As you guys know, both Dave and I are Penn State graduates and have a huge family support system of past Penn Staters, both in our relative families and friends. This past weekend was something called Penn State Dance Marathon, or THON. It is the largest student-run philanthropic event in the world. THON is a dance marathon where students gather at the Bryce Jordan Center in State College, PA to dance for 46 hours straight in order to raise money for the Four Diamonds foundation, which helps families with children who suffer from pediatric cancer. The foundation also works to fund research for those who are trying to find a cure for this horrible disease. The students are not allowed to sit for the entire 46-hour period. This event is incredibly important to Dave and me. Dave was a campus chairperson for THON while attending Penn State and I've been a THON supporter from my first year at Penn State.

This year, THON raised $12,374,034.46 for the Four Diamonds foundation, breaking $100 million mark of money raised since 1977, which was the first year of THON. Every year, this number gets larger and larger and I couldn't be more proud. One day, we are going to find a cure for childhood cancer and Penn State is going to be part of that success. That isn't why I'm proud, though. I'm proud because the student body of my school has adapted this event as part of their culture and everyone is passionate about it. As a school, we realize that there are things out there bigger than us and we are doing our part in the best way we know how.

I'm bringing this up because as a person who is persevering through their own fight of health (but nothing close to the magnitude of pediatric cancer), I realize that everyone has their fight. The fight of pediatric cancer is a specially unfair one, but also a fight we are determined to win. Penn Staters have adapted an acronym that is now synonymous with THON - FTK - which stands for "For the Kids." It's a simple saying that sums up why it is that we dance to raise money for pediatric cancer. The families that are supported by Four Diamonds attend THON, as well, and it gives their children a sense of normalcy and joy - a weekend to forget about the fact that they are sick and just have fun.

To learn more about THON or to donate money and contribute to next year's total, please visit www.thon.org.

Getting Ready to Start a Family

My guest post on "Third Stop on the Right" is posted.

You can view it here.

When I wrote it, I was thinking about everything that my body was going through and realizing how worth it is going to be. These were just my thoughts.

Making it work

I'm officially on day four of taking the Lamotrigine ER.

The results:

I'm DEFINITELY not as nauseous. In fact, I haven't had any nausea for the past two days. It's like a miracle!

Also, my appetite is significantly curbed. When I was on the regular Lamotrigine, I was stuffing my face constantly because I was trying to saturate the medication to not feel so ill. I'm eating like a normal person, again, and have lost a few pounds in the past couple of days because I'm not consuming over 2,500 calories a day anymore.

I've been drinking water, again, as well. I was drinking a lot of soda because the bubbles was calming my stomach.

The price is still staggering to me though. I feel so guilty about taking a medication this expensive. I know my health comes first, but I feel like it is going to cause us more stress, financially. I'm looking for coupons, currently. There is a coupon for Walgreens that would lower the price to $300-something, which would be huge. It doesn't say if it is only for one month, six months, a year, or forever. I'm going to bring it into Walgreens and see what they have to say.

It would be great if this could at least temporarily help us. That way, I would feel better and it would bring us closer to having the price lower naturally within the insurance companies.

Fun Fact of the Day

Today marks one month since I've had no Tegretol in my system and have only been on Lamictal. Even though I've now started the XR, it's still the same ingredients and it's nice to know that it works just as well as the Tegretol did for me.

Happy one-month anniversary to me!

Oh my lord...

I received the okay to switch to the Lamotrigine XR (awesome, right?). So, yay! I may not be sick for an eternity now.

However, it was quite a blow to hear the actual price. From a retail store: $630 for a 30-day supply. From the mail-order through Aetna: $2,100 for a 90-day supply.

I seriously almost passed out.

Dave called the third-party insurance handler for his company to figure out if if is applying to our deductible, and, once we hit the deductible, will the medication be free? That makes a hugs difference on whether or not I'll switch.

I would like not to feel sick all the time, but I also don't want to put my family in any kind of financial burden. If it is a choice between me feeling sick or taking care of my family, my family will win every time.

Dave is going to text me once he gets a response and we will make a decision. I'll update with the results later.

***UPDATE: 2/9/13 @ 12:50am***

Dave spoke with Jill at the insurance handling office. He told me to go ahead and fill it.

To be honest, the price petrified me. I raised my concern about what would happen if we had a "player-to-be-named-later" and financials. Dave said that as long as we budget correctly everything should be fine and to still go ahead and fill the prescription.

It still scares me. Like, a lot. But, I know this is going to make a huge difference In how I feel and I'm still able to keep our future family safe. And I will still reap the cognitive and simple-motor benefits of Lamictal.

I am now taking 200 mg 2x/daily of the Lamotrigine ER. I took my first pill tonight. I'm taking one distributed by Par Pharmaceuticals.

I spoke with my pharmacist and he said while it is an expensive drug, many people are now having great luck with it and that once it has been public for six months to a year, the price should begin to fall. Theo more people switch to the generic, the quicker the price should fall.

I'm looking forward to seeing the results. Fingers crossed for the next few days!

Lamictal Extended-release

Yesterday was probably one of the worst days I've had. In the morning, I woke up, took my Reglan, had my coffee, took a shower, took my Lamictal and started to dry my hair. Within 3 minutes of starting to dry my hair, I burped and threw up (gross, I know) in the sink. I moved over to the toilet and dry-heaved for another few minutes before I was able to compose myself and rinse/disinfect the sink.

The only thing I did differently yesterday was that I didn't eat a snack before taking my Lamictal.

However, to me, this was the straw that broke the camel's back. I can't keep living in fear every day that I might feel sick or throw up, again. Last night, we went out with friends after going to the Sixers game (Dave's cousin is an intern and got us seats!) and I was feeling miserable the entire time. It is now completely interfering with my life.

My honest opinion is that since I was on Carbamazepine ER (extended-release) for 20 years that my body isn't used to getting this much medication at once and raising the dosage only exacerbated the situation.

Lamictal does have an extended-release, however, the generic version hasn't been released yet. The FDA only approved the patent for it in early-January 2013. The article says that they are beginning to work on the launch immediately, however, in my experience, they try to hold on to the patent as long as possible. Sometimes, over 10 years. I've put Google Alert up for me that if any news is released about it, I'll be the first to see it - and of course, update it here.

I'm going to be calling Dr. L's office and asking about the possibility of switching to the XR. I know that until the generic is released it will be very expensive, but if my body responds better to it and makes life more bearable while allowing us to safely try for a baby, then I'll take it.

I'll let you know what they say.

More phone calls

Sharon (coordinator from the Epilepsy Program at the hospital) from my neurologist's office called me yesterday when I wasn't home and reached out again to me today.

Apparently, Dr. L left instructions for both Sharon and Nurse Gary to reach out to me about my trough levels (she is currently out of the country).

Sharon said that she is going to reach out to Dr. L for further instruction. I need to remember to call tomorrow. I realized that while I have enough 25mgs to count out the 200mg dosage, I only have a couple days of 150mgs left. I need to find out what course of action they would like me to take.

Here's to hoping that 2 weeks goes by fast...

***UPDATE: 2/5/13 @ 5:16pm***

Sharon called me again. She is sending me a script in the mail for another Lamictal trough level. She wants me to get it the last week of February so they will have the results for my March 11 visit.

Nurse Gary called...

You've got to be kidding me. My blood work came back from Quest about my Lamictal trough levels ...and they are low!

I can't believe this. They are raising my dosage by 25mg (total of 50mg a day).

Lamictal trough levels are supposed to be between 4 and 16 (of what measurement, I'm not sure... Never really asked. I'll have to ask that when I go in next). Mine came in at 3.8.

I am supposed to try the increase for 2 weeks and then give them a call. I may have to go in for more blood work to see the status of my medication then. Nurse Gary told me to continue the Reglan as needed. I don't know what we are going to do if the nausea continues to be so bad, especially with an increase of dosage.

I have a feeling that we are going to have to reevaluate a plan of attack for the nausea at my appointment in early March. I can't take the Reglan forever. It's a medication that is similar to Prilosec and not supposed to be used long-term.

I guess this is just one more hurdle.