Tuesday, April 29, 2008


Needed a space to rant about our health care systems. The layers of bureaucracy are just insane and so frustrating!!!!!! I'm trying to get beta seron. It is really hard to motivate myself to contact people so that I can start paying for this really expensive and injecting it into myself. I wish they would just make it easier for me--mostly I wish I didn't have to deal with all this, there are enough other things going on . . . but that's beside the point.

So I called Betaplus--to check on my application for patient assistance. They told me I qualified just today so tomorrow I can call their pharmacy and get a 90 day supply delivered. When she told me the price I said my insurance was actually $5 cheaper so I'd go with my insurance.

So, I called my insurance--after lots of automated button pushing--I talked with someone who told me that I could only order a 30 day supply and it was going to cost $60. Now Betaplus was cheaper. It turns out I was going by a quote given to me at the beginning of the year when we were officially under our new PPO insurance but because of Xavier's outsourcing of their health care plans the switchover hadn't reached Anthem so I was being quoted prices for the HMO which we had in 2007. Craziness. I didn't actually lose money or anything but just all the phone calls makes me insane--

So now I need to call tomorrow and hopefully can still get the betaseron through the patient assistance program.

While I was talking to the insurance company Dennis was talking to people about our Flex spending account. We signed up for the government health spending account at the beginning of the year. We thought we only had one chronic condition and didn't take out the full amount of pre-tax dollars--next year we'll know better! They have this cool little debit card and you can use it just like a credit card to pay for all your copays, out-of-pocket expenses etc. It feels like free money to me because it comes out of every paycheck before taxes. I've been loving it.

Well, then our account was flagged. I guess randomly account are flagged and you have to submit your receipts. Not a huge deal but kind of a pain because although we keep everything we have mountains of paperwork, insurance claims, doctor bills, hospital bills. I pay lots of stuff online and children's hospital has a complicated, somewhat messy online billing system. Hopefully a new system is coming out in July. So we called when we were flagged and they were nice and said to just send everything and they would sort through stuff. So I printed out the bills I thought matched etc etc. It wasn't a huge deal but took the whole of nap time one day.

Well, we were flagged again. Mostly it was my MS stuff--radiology bills. Dennis called to find out why we were flagged again. We just want to know where we can use our money so that we can avoid the hassles. Children's hospital is suspicious because we could be doing plastic surgery. Radiology is suspicious as it could be radiology tests for doing plastic surgery. Really ridiculous. I guess there is a lot of people trying to do plastic surgery on the governments dime!

Dennis asked if he could speak to someone to find out how they decided to flag certain records and they told him that it was actually done by a separate company. When he asked for that company's name he was told that he couldn't speak to them. It's silly but infuriating. The levels upon levels of bureaucracy!!!!

Wednesday, April 23, 2008

Too Much Time!

I have spent far too much of my time today on ms. Because of the whole heparin issue I started thinking about where beta seron is made and so I decided to call. No one knew where it was manufactured and I had to call a couple of places and finally spoke to a nice nurse who spoke to someone and found out that it is manufactured in the US under the watchful eye of the FDA. Of course she was quite good at her job and knew that I wasn't just calling about that. I just hate that I'm going to have to start taking this and that I kind of have to admit that I really do have this thing.

They have surely labeled me as crazy. And sometimes I feel as if I am.

Then I spent time tonight filling out forms for patient assistance. i don't think we'll qualify which makes me not want to spend all the time filling papers out--i have a similar problem with the medicaid forms for my son. But I also hate the thought of paying for this drug. it just doesn't seem fair. i didn't do anything to get this and now i have to spend our money on this instead of xyz. just sucks.

Monday, April 14, 2008

I've set a personal deadline of May 1 to start on betaseron. I decided that I had better get into action and order the meds and set the date with the nurse to come and teach me how to give the shot. I was a little frustrated that the company didn't make more of an effort with me--they are going to get tons of money from me and I have little desire to start sticking myself with needles. I guess I kind of fell through the cracks since I didn't start immediately.

But now I'm hoping to get a call this week and hopefully get signed up for some program for helping to pay for this thing. I just got a little freaked out this morning after read a nytimes article
about insurance companies switching their tier 3 drugs (like beta seron) to tier 4 where instead of a standard copay you have to pay a percentage of the actual drug cost. Scary!!! I guess more and more insurance companies are turning to this kind of a plan for all these high-priced drugs. I don't know what we would do . . . no reason to stress yet . . .

They did send a training kit which arrived last week. The boys were excited about the package so I opened it and on top were the sharps disposal containers. Kind of freaked me out--so surreal that soon they'll be part of my life. Dennis took the boys outside to play so I could freak out in private. I organized the spices. Things seem better now. It just takes time.

This time from my diagnoses to starting on meds has been wonderful, just time to kind of adjust but with no real symptoms and no meds it's hard to remember that I even have ms. Making all the phone calls and getting the training package is starting to make it seem a little more real.