The Ongoing Saga for Healthcare Coverage

I have been trying to compose a blog post on this topic since November 19. This is currently my 5th draft. I’m hoping to write a composed entry, rather than an unbiased ranting of a raving lunatic, because really, I’m so frustrated I just want to throw things.

I have epilepsy, which left me no choice for insurance but the Federal PCIP program when my COBRA ran out. When I had to wait 6 months without insurance to apply for PCIP, we felt that financial pain on our budget just on my meds alone, which cost an average of $1000/month. I have not calculated or included the cost of my husband’s medications at this point.

Now, we’re facing the same situation again. PCIP is going away at the end of the year. If I’m unable to find affordable coverage by December 15, I will not have insurance at all on January 1, 2014, and I’ll get to pay a penalty for that privilege. Continue reading “The Ongoing Saga for Healthcare Coverage”

Firsts

I’ve spent over a year experiencing “firsts”. I’ve finally accepted the fact that the Universe is throwing lessons my way and if I keep closing my eyes and going “la-la-la-la-la”, this train ain’t gonna’ stop. I’m going through a period of growth and change in my life. Again.

Tomorrow I get to experience another “first” – one I’m really not looking forward to. One that terrifies me. I’ve debated blogging about this, though, because this particular experience is nothing new to a lot of people out there. I may come off sounding like a whiny little snit. If I do… :: shrugs :: I can’t help it. Try to see things from my perspective.

Tomorrow I will officially be uninsured. My COBRA insurance expires at midnight tonight. Because of my epilepsy, I can’t get healthcare coverage through any of the insurance providers. My COBRA coverage can’t transfer to an individual policy because they’re based out-of-state (something to do with insurance companies not being able to provide coverage across state lines, even though Blue Cross is Blue Cross in WA and in TX). The only insurance I can get right now is the State High Risk Pool, which is ungodly expensive. My other choice is to go 6 months without any kind of coverage and apply for the Federal High Risk Pool, which is affordable. But asking someone with epilepsy to go 6 months without healthcare coverage is asking a lot. Just like asking someone who has a heart condition, or asthma, or any other condition that required regular visits to a specialist and expensive medication.

I haven’t been without insurance coverage since 1987. Yeah, I know… last year I was saying I hadn’t been without full-time employment since 1987.

I don’t like being afraid, damnit. I feel like my last “safety net” is going away.

The Great King COBRA Rant

I can’t convert my COBRA insurance coverage because Premera BCBS is out of state. I have to apply for individual coverage here in TX. They can’t transfer my existing policy because it’s a group policy. I’m an automatic “deny” on my healthcare app with BCBS because they want you to be seizure-free for 5 years before they’ll touch you. They suggested the High Risk Pool.

On the Federal High Risk Pool, you have to go without any insurance coverage at all (note, COBRA counts as insurance coverage) before they’ll cover you. Texas has a State High Risk Pool but if you’re on COBRA and your plan has a conversion option (which, technically, mine does; I just can’t use it because they’re based up in the northwest part of the country and I’m “out of state”), you have to wait 6 months before they’ll cover you.

This. Is. So. Fucked. Up.

I thought “healthcare reform” was supposed to help people who can’t get insurance. WTF? Am I missing something?

My surprise this morning

Those of you who follow my blog have probably figured out by now I have epilepsy. In November of last year, my neurologist added the generic form of Keppra to my seizure control meds (Levetiracetam). He did so in order to better control the brief, 2-second, simple partial (or, Absence) seizures I would have. For those unfamiliar with these, a 2-second simple partial seizure appears to someone else as though the individual is momentarily distracted. The person having the seizure is aware, but it’s more like a “blip” on the radar. That’s the only way I can describe it. But I digress…

I should note, prior to adding this medication I was never photosensitive. That is, strobes did not easily trigger seizures for me. Laser tag was out, but I could safely go to a dance club. In February, that changed. I was out with the girls; we were dancing and having a great time. As the music changed, so did the strobes in the club. I could feel that “out of body” sensation. I just stopped dancing in the middle of the song, looked at my best friend and told her, “I need to get out of here.” We were all on a cruise ship that weekend. I made a B-line for the door and just sat on a bench in the hallway. Lyl came out with me. She was asking me the standard questions. I could answer her but I was slow to respond. Everything was slow. It was a simple-partial seizure, but it was longer than the 2-second blip I used to have. This was more of a “train” of simple partial seizures, coming in waves (and no, not the waves under the boat…<g>).

The same thing happened the next night at the dance club, but not as bad.

I told my neurologist about this, and he increased the dosage of the Levetiracetam. In March, I had a full blown generalized seizure. At this point, I can’t drive for 6 months.

My neurologist increased the dosage of the Levetiracetam again. Four weeks later, I had a full day of the simple-partial seizures, where they come in back-to-back trains.

He increased the dosage again. I had another train of simple-partial seizures 3 weeks later.

At my next appointment, he started to suggest increasing the dosage one more time. I told him I didn’t think that was working. I didn’t think the Levetiracetam was working, and pointed out my threshold seems to be lowering as we increase the dosage. This is what I like about my neurologist – he listens to his patients. He reviewed the overall pattern and agreed with me. We discussed weaning off the Levetiracetam, which is exactly what I’ve been doing over the past few weeks. I haven’t had any problems yet (:: knocks on wood ::).

My surprise this morning? Just out of curiosity, I was doing some research on Levetiracetam. I found out there’s a class action lawsuit on the medication. It seems the generic for Keppra isn’t quite as effective as the brand name. Patients who were switched from Keppra to Levetiracetam experienced an increase in their seizures, causing them to lose driving privileges. It is being stated that persons taking the generic “could lose driving privileges due to the fact it can onset more seizures, it will also impair them from employment or school with time lost.” There have been cases indicated of injuries from the drug. It was noted that at least 59% of patients on this medication had more recurring seizures.

Now, that statistic is from an article written in 2010. However, I found other sites indicating the class action is still being pursued. It’s possible my neurologist is unaware of this (and I do plan on asking him on my next visit). Regardless, why is this drug on the market?

I’m floored.