Tags: nuvigil

Saturday at the 27th Narcolepsy Network Conference

Woke up earlier than I had intended, due to sleeping to the end of my first dose of Xyrem and then triggering a the release of rain out. Force me to get up. I then killed the rest of the morning journaling and facebooking until it was close to time for breakfast.

Breakfast was good, and I was able to pop back up to the room before introductions for a bit. And, then it was introductions and Keynote by Dr. Mignot...which was pretty interesting stuff about the further developments and research into the autoimmunity and genetics of Narcolepsy, the H1N1 connections and the special cases on increased Narcolepsy cases. The basics was that version of the H1N1 vaccine was that it was a weaked H1N1 live virus plus a agent to boost immunity....which likely lead to a boosted auto immunity action. But, that there was also a spike in Narcolepsy cases in other parts of the world, suggesting that the H1N1 itself also caused. And, then some more stuff about the Hypocretin, which included points about the low cut off...which he touched on briefly in the Keynote, but expanded on a bit more in the Q&A session later.

There maybe be hope yet....

But, before the Q&A session with Dr. Mignot, I caught the Update On Nuvigil session. Which wasn't as great as the Nuvigil presentation that was done in DC, but interesting on other fronts and its Q&A. Largely because it was given by the medical director of the division of TEVA that now has Nuvigil through TEVA's acquisition of Cephalon. But, he did go into the fact that its mechanism of action isn't understood, and the extent of the testing that Cephalon had done on Nuvigil...which explains why it doesn't necessarily work as well as Provigil in others, etc. Basically that no head-to-head trial was performed, just mainly to testing to show that its plasma concentration translates to being longer lasting.

So, then I listened in on the Q&A session with Dr. Mignot, and then it was time for Lunch and Membership meeting. Which was kind of small, and not that special....and more into its presentation....though dessert was nice, though they wouldn't bring out dessert for the people that had to leave early, like entree was barely on the table when the support group sessions were starting... Plus I'm sure other's would've just liked to have had the extras anyways...since they were probably paid for whether they were brought out or not.

But, staying the end covered the important detail.....next year's Narcolepsy Network Conference will be in Atlanta, GA. Already thinking about what I should do to start saving for it. Plus, I'm starting to think that maybe my first year experience on conference committee hasn't been as bad as its been. Though that just be the Xyrem helping the EDS. It was pretty painful being on the calls before Xyrem, I'd be wanting to be in bed before the conference call and likely being in bed if it weren't for the call.

There was then a Nap Opportunity after lunch, I had intended to do by popping back up to my hotel room, except when I got up there, housekeeping was working my end of the floor. So, I ended up just brushing my teeth and taking another stim. Which pretty much got me through all the way to the end of the day. Though I also did take a load off for bit. Which also helped.

In the afternoon, I caught The Over and Under Diagnosis of Narcolepsy, which was interesting, especially on some of the cases that were presented. Though I got to wondering, what if while I was living in Dublin, Ohio....I had gotten referred to him for evaluation....would things be same/different/better. And, why such a thing never came up.

I thought about asking that after the session, but I wanted to catch the Xyrem Q&A session after his. So, I went back to find a new seat and listen in. And, I think I learned a lot from the questions raised by other people, and the session continued out into the hallway afterwards...where I got my chance to ask my questions and get answers....in the end I think I learned some useful facts on how Xyrem works and things I can do to help improve the balancing of side effects and efficacy, as well as something thing to consider on the management of my other problems.

This of course, meant that I missed the final session...which would've been the Dietary & Environmental Strategies for Managing Narcolepsy Symptoms. So, I got in some socializing, and getting ready for the Dinner Cruise on the Nautica Queen.

Where I was kind of questioning why I had gone with the Dinner Cruise, given its length and such....but it turned out to be a good time with food and good conversations.

But, now its time for bed...and tonight I will try to get in two doses before breakfast at 7:45 am -ish.

My first trip since starting Xyrem

I mostly survived.... I flew down to DFW to take care of some business at the DHS Global Enrollment office. Having used the Global Entry benefit of my Amex card. Wonder now if I should add Nexus.

And, I was surprisingly awake and productive through most of the trip. Despite being out of my Dex, was supposed to hear about a refill script though had canceled my appointment for having to go out of town for an emergency... guess nobody else there has come through on writing the script for him. Though don't know if the 12-hour decongestant on top of my Nuvigil helped or not. In past trips, I could sleep most of the flight away even though I had taken my Nuvigil and a 12-hour decongestant. This trip...there was still the uncontrollable desire to sleep during take off, which I gave into on the way to DFW...but didn't on the way back from DFW. Otherwise I was awake and productive during the trip.

Though I had originally intended that the productive time would be used to finish some of the many draft posts languishing on my main blog, I spent most of it back filling this site scattered posts along my journey so far.

It was really nice finally using another benefit from my Amex card...."Airport Club Access Program". Certainly made a big difference being able to sit in the Admirals Club working on my computer than if I had to sit in the noisy, busy main terminal space, next to whatever outlet I might find.

In the end, the only problem was that the total trip was a bit longer than 12 hours....and the decongestant gave out somewhere into taking off on the way home. I could feel the pressure building in my head as we got closer and closer to home. Wonder if the light supper before was a problem. I never did pin down what foods in the evening lead to congestion and such. Usually I don't eat at the airport at this time, but I wasn't going to eat after I get home like I normally do. Was worried that I might blow an eardrum like I did back in 2005 (flying back from an interview with Yahoo! Mail). Fortunately, landing in Manhattan restored the balance. Wonder what I should do now that I'm home.

The other thing I did different this trip, was using BlackCarMHK. Which was really nice....got to the airport way earlier than I needed to be, especially since I didn't have a bag to check...which I will in my future trips. And, it was definitely better for the trip home than I've ever had to go through. That part definitely makes it worth it for flying out of MHK. They also do airport transfers with MCI, and I'm certainly tempted to consider them should that need arise. They also do Wichita, which may have possibilities. Plus who knows what else there'll be that isn't an airport to consider.

QHDHP, HSA and Chronic conditions

This month is annual open enrollment at work....time to review plan changes and make selections for January 1st, 2012. This year, premiums have jumped up a lot...particularly for single people. The implication is that for the last few years, they had drifted from the mandate that employer pays 95/55 of the health insurance costs (95% of single, 55% of family). Guess that means they had been paying more than 95% of my cost? Because my BCBS Plan A premium jumped by 44%. Plus every 3 years they renegotiate plans...and this was the year they did that.

Other than the premium jump...which was much greater compared to previous years (which hadn't jumped up as much as I had seen with previous employers). There were only a few changes this year.

The coverage on the 3 plans (A, B, C) have all stayed the same. All plans are PPO, Plan A has a 20% co-insurance rate versus 35% co-insurance rate for Plan B (in-network, all are 50% for out-of-network)...and Plan A has higher co-payments than Plan B...and higher deductible. New next year, is that BCBS will be offering Plan C (QHDHP). Other changes, is that Coventry and PHS have now merged, and United Health Care is now the 3rd provider option (though technically there were 4 provider choices last year, with addition of UMR... a sister company of UHC, but with a smaller network...and Coventry and PHS not yet merged.)

When I first started, they were HMO, PPO, QHDHP plans....and I had gone with PPO, even though all my providers were in network. When I had first moved to the US, I had started on an HMO plan...and it was bad. Like the time I went out of my way to go to what was supposed to be a Quest collection site for labwork, instead of letting my doctor do the labwork on site. And, end up getting fully charged for using an out of network lab, because the site had cancelled its contract with Quest the week before (but I had called Quest the morning of the test...so they shouldn't have misled me)....I complained, they apologized....but I never got the refund they said they would do.

Using Quest was only part of the HMO plan, so switching to PPO was good. Though later things changes to where if the practice where your primary has their own lab, the lab is automatically considered as in-network....so there was further savings, but I stayed with PPO because. Later they brought Quest in for PPO with some providers....I just picked the PPO provider that didn't use Quest.

Anyways....in my current job...Quest had jumped into the plans....though its optional. And, the Quest collection site isn't anywhere that can be reached on foot (and I'm kind of down to just the one foot now)...and the doctors in my area won't participate with Quest. At first it was part of the HMO, later it extended to Plan A & Plan B (since all 3 plans are PPO now). But, its still optional, and the labs that my doctors do use are in-network.

When I started, I went with BCBS....because I hadn't established relationships with local doctors, but BCBS had the larger network...both in state and out of state, and with relatives scattered around the country/world....access to a large out of state network was important. Plus now that I also attend conferences, conventions and such...it is hopefully less of a worry.

But, when they switched from HMO, PPO, QHDHP to the Plan A, B, C naming....I switched to Plan A. Which was at first explained as the HMO plan with PPO features. But, now they just say all 3 are PPO plans....just different cost structures.

I never really considered the QHDHP option...because I never really understood FSA/HSAs in the beginning....wasn't until 2009 that I started using an FSA. And, the steep deductible scared me (still is scary). Though one thing that intrigued me at this job, was that the prescription plan on the QHDHP/Plan C option was different from the HMO/PPO/Plan A&B one. The A&B plan was co-insurance, no deductible...the typical 3 tiers with some extras classes. When I started, it wasn't an issue...since most of the stuff I took was either generic or preferred brand (well, when I first moved to Kansas I was on Prevacid, which wasn't a preferred brand....but primary switched me back down to Prilosec which is generic. Though can't help wonder if my health taking its turn for the worse didn't start when that change was made...and now that Prevacid is available as generic....:hmm:) Anyways...Plan C's prescription plan was co-pays after deductible, which was the kind of prescription coverage I bad before I came here. Not always a good thing though...since $10 co-pay for generic.. where as I have a couple of generics where the 20% co-insurance is less...some generics I've had fill come out to $0.92, $2.02, $3.53, $1.58, $1.39....on the other hand...the co-insurance on branded meds were costing me much more than co-pay....and the worse ones were yet to come.

So, in open enrollment 2008 (for 2009), I decided that it was time to see what all this FSA business was about. I went with a minimal contribution....$300 for the year. Well, I didn't know at the time, that combined with the results of my first 'free' Healthquest screening from work and my annual physical (Well Man Exam) that I'm not supposed to be sleepy all the time, have experience that surge in weight gain during the summer, fall asleep easily during the day, including at least one uncontrolled nap each day.... I just knew that in 2009, co-insurance was change from 10% to 20%, and co-pays were going up.... But, I had my first sleep study in December 2008. I got initial setup that month...so 10% co-insurance versus 20% was a good thing, plus deductible was less, and already met, in 2008 than in 2009.

But, because of the OSA dx, I quickly met my deductible (which had gone from $50 to $150) and spent my entire FSA amount in the first week of 2009.

So, in open enrollment 2009, I decided that I should put more into FSA....but I didn't expect that I would have the same kind of major expenses that I had, so I increased my amount to only $1200. This was even though I had an accident in august of 2009, and it had cost me quite a bit. But, it was the accident that kept on giving....When I got my teeth cleaned in Jan 2010, it was discovered that I had cracked some teeth in the accident....so the $1200 was gone in a couple of months.

Meanwhile...in 2010, I was introduced to Provigil and Lunesta. The co-insurance on Provigil was about $380 a month, and Lunesta was about $112 a month. Plus then I had an accident in November of 2010, and another sleep study in December. What I discovered though was what happens when I hit my co-insurance maximum for 2010. I still have to pay co-pays...but after than everything is covered in full. While reading over the plans on co-insurance maximum, I saw that the prescription plan had a separate co-insurance max of $2850. I wasn't going to reach it in 2010, with the Provigil costs....and Lunesta didn't count towards it (even though they said if you had tried two other prescriptions before it, they would...which I had....they did require my pharmacist to call in to get permission to fill it, even though they would already know that I had been on prescribed 3 different ones before it. Though I guess 2 of them were off-label? Though the PDL only lists one drug for the class, which I had been on, and only generics...they have no preferred brand.) Provigil is also alone, as the preferred brand....though it is quite different than the other types of stimulants (Ritalin, Adderall, Concerta, Dex, etc.)

So, in open enrollment 2010, I considered switching to Plan C. They still keep telling everybody that Plan C/QHDHP is only for super healthy people. But, because of the co-pay structure of the prescription plan (after deductible)...I wondered if it might not be the better way to go.... It would take 1.5 months worth of Provigil to meet the deductible..and then I would only have to pay a $30 co-pay. Maybe sooner, depending on what else happened at the start of the year. I didn't know I was going to break my foot in November 2010. What I did find out was that one of my meds was capped at $20 a month (Singulair), where as it would be $30 co-pay with Plan C. The Plan C prescription plan didn't have the specialty tiers for things like diabetes, asthma, anti-cancer.... and it wasn't like I was on Xyrem or something super expensive. Though I had looked, and Xyrem is on the list of specialty meds, so its a $75 co-pay.

But, I had missed the open enrollment presentation (because I had gone to the NN Conference) and I didn't have a lot of answers on why they only consider Plan C for super healthy types....and not somebody like me.

The other problem is that with an FSA I can spend all the money I plan to put into it before the money is actually in it. While with an HSA, the money needs to be there first. They did say the first year is the hardest.... So, running out of time, I quickly locked in my discount status, staying with Plan A & BCBS and other stuff...and went with putting the out-of-pocket maximum of Plan C into my FSA (which is less than the current maximum that I could put into an FSA.) I had skimmed the networks of the other providers...to see if my current doctors were in, and whether they offered any other choices that BCBS didn't....

Well, I spent all my FSA for this year in about 4.5 months...and only because I switched to only submitting the bigger claims after I got my tax refund.... Though this year the the deductible did feel more painful. It had gone from $150 to $300...but I also didn't have the big expenses early in the year...so it was a bunch of little things where I had to pay the full discounted amount... Not sure where I stand on reaching co-insurance max this year for health ($1400)....

Had I still been on Provigil...I would've reached co-insurance max on the prescription plan around July...but as I had been warned at the NN Conference, I would build tolerance to it...and it stopped working in spring time.....where I was then switched to Ritalin.... And, I quickly built tolerance to that....so at the end of August I was switched to Nuvigil....which seems to be working better, and apparently its the other isomer that is in Provigil that we build tolerance to. I briefly tried Provigil again between refills, and it did little for me.

Problem with Nuvigil though is that its the non-preferred brand...so it doesn't count towards my co-insurance max....though I'm about $1000 away, so I probably won't hit it this year....even if I could've gotten the override (having tried Provigil and Ritalin before, should've met the tried two other drugs from the PDL first....also the co-pay coupon from Cephelon apparently doesn't work. Just as the co-pay coupon for Lunesta didn't work. They both say they won't work with plans that are state/federal government funded....so no discount for us poor state employees).

The other change this year is the prescription plan for Plan C has changed...its more like the Plan A&B one, except adjusted to fit the QHDHP. So instead of co-pays after deductible and continuing after out of pocket max is reached. It is just co-insurance after deductible and then 100% when out of pocket max is reached. And, tier 3 drugs count towards the out of pocket max (as do drugs on the anti-cancer tier).... Also with Plan C, there's no co-pays to see doctors....so once out of pocket max it reached....they're covered 100% in full. Didn't seem a huge deal before 2010...because PCP and sleep doctor were in the same medical home, so $25 co-pay for either....the only specialist where I had to pay $45 co-pays were related to physical therapy...and I didn't do that this year (though wonder if maybe it would help my walking issues since broken foot incident....maybe next year if things continue to worsen...)

Given how quickly my FSA went this year, and my current projected expenses (and the changes this year)....it shouldn't be that hard to reach the $1500 deductible or the $3000 out of pocket max in 2012...so it'll be interesting to see what it is like to have things covered 100% in full after that point. Especially since the current co-insurance on Nuvigil + Lunesta x 12 is more than the out of pocket max. I had considered asking about Nuvigil sooner, because paying 60% of it (non-preferred brand)...instead of 35% for preferred brand)....is about half the 35% I pay for Provigil. But, when the Provigil stopped working, doctor wanted to try Ritalin instead first....which did work in the beginning....but it didn't seem to matter to insurance on when I did get to be on Nuvigil. I decided that I would more strongly consider the switch to Plan C.

The fact that BCBS offered it was certainly a big factor, since I had concerns over network last year. And, during an open enrollment presentation..somebody asked why Plan C didn't work even if they hit the out of pocket max in the year (and all the money they put into the HSA)...

for an individual/in-network
Plan A has $300 deductible + $1400 co-insurance max & Rx has $2850 co-insurance max (where tier 3 doesn't count towards it)
Plan B has $150 deductible + $3000 co-insurance max & Rx has $2850 co-insurance max (where tier 3 doesn't count towards it)
Plan C has $1500 deductible -> $3000 out of pocket max & Rx works with the same deductible/out of pocket max (and tier 3 counts).

So sounds like if you know you're going to be out of pocket more than $3000 in a year...plan C is the way to go.

Plus with Plan A & B, the co-pays continue after the co-insurance max is hit. Plan A is $25 (Primary/Urgent Care), $45 (Specialist) and $100 (ER). Plan B is $20 (Primary), $25 (Urgent Care), $40 (Specialist) and $100 (ER)....there's an advantage for families, where co-pay for children is $10 (Primary) or $25 (Specialist)....

In addition to no co-pays with Plan C (versus Plan A)....there are two other differences, the Manipulation Therapy (IE: Chiropractor) is reduced to max of 26 per year (from 30). And the Durable Medical Equipment maximum is lowered to $1000/year (from $5000/year).

Since I just got a new CPAP machine this year, I don't anticipate my DME expenses to be more than $1000...in fact the new machine plus supplies this year shouldn't break the $1000 mark. But, who knows what the future holds.

So, since United Health Care is a new provider this year....I started to think that I should check out its network as to whether to stay with BCBS or not. In the first open enrollment presentation, I didn't stay for the HSA presentation. Because I was at first thinking that I would stay with Plan A, and this time put the $5000 max into FSA....before healthcare reform lowers the max to $2500. But, in the time between the morning presentation and the afternoon one, I started the research on Plan C/HDHP/HSAs, etc. And, decided I wanted to hear the HSA presentation.

Fortunately, they did that one first in the afternoon session.

So, I instead looked at the HSAs associated with the 3 providers....and decided that BCBS would be who I would go with.

The BCBS HSA has a maintenance fee that falls between the other two (close to the low end, where the high end one is significantly higher...and the one for UHC). The interest rate structures differed, but all were insignificant for low balances. The other two, offer maintenance fee elimination with a minimum balance. The lower one waives off at $3000, the higher one waives off at $5000....there's differences in investment options and additional fees. BCBS HSA has a lot less in the additional fees area. And, what investment options it offered seemed ok.

But, given that I'm expecting to hit out-of-pocket max (which is the contribution max for the HSA)....how much the HSA will cost for little or no balance weighed in. Though I will probably build some of my HSA over time...since initial expenses will be before the HSA is sufficiently funded, and I may or may not chose to use HSA funds to meet all my later out of pocket expenses.

On the additional side, I opted to go with $600 for a limited use FSA (Dental and Vision....I have one dental related prescription, and I anticipate the buying a new pair of glasses every year to be a trend that continues indefinitely.) I kept my Vision insurance.

Now to see how 2012 goes....