Friday, March 8, 2013


There really isn't much new to report in my life, but I did need to vent slightly about insurance. This week, I called in my refill for Pulmozyme (one of my breathing treatment medications). I still had a few days worth of medicine left which would give the pharmacy time to get in stock since they very rarely have the medications I need available. I received a "courtesy call" from the lovely automated pharmacy woman informing me that there would be a delay on my refill. I assumed that meant they were having trouble getting it delivered and chose to wait it out.

I ran out of the medication yesterday and decided to call the pharmacy to figure out what in the world was going on. The man I talked to was very nice as he informed me that my insurance was refusing to cover the medication because they believed that I didn't need it. Let me say that I have been on this particular medication since I was diagnosed at six years old. Not to mention, I have cystic fibrosis, a lung disease, and Pulmozyme is a breathing (lung) medication. To say the least, I was extremely frustrated with the whole situation. What is the point of having insurance if they aren't going to help you when you need it?

I called my CF clinic at Vanderbilt and got the CF nurse on the job. She called the pharmacy and the insurance company and discovered that they would only cover my prescription if it is ordered from a certain pharmacy because they get a discount. (Pulmozyme is not cheap by any stretch of the imagination.) My doctor sent the prescription to that particular pharmacy, and I gave them a call. The woman told me that they would be getting in touch with me as soon as they had it in their system. Time keeps ticking away, and I have yet to hear from them about receiving my prescription. The cherry on top of it all is that it is a mail order pharmacy meaning that it may take longer to get my medicine.

Enough with the negative for the day though! I am on day 19 of being compliant with my treatments (minus Pulmozyme today). Yesterday, we had the Great Strides kickoff, and it was fantastic to get to meet some of the parents who have younger children with cystic fibrosis. Because CF is a lonely disease, I have found that I really don't know many of the people in my own community who are dealing with the same things I am. I am so thankful to be in the position to meet with and hopefully, inspire these younger families taking on the cystic fibrosis battle.

On that note, Happy Friday! Enjoy the weekend! We are supposed to have warm weather, and I intend to spend some good, quality time outside in the sun! :)

1 comment:

  1. My battle is almost similar with your but I think a bit worst. It started in a single wound that spreads in several months where I was diagnosed with mrsa infection. This is really bad for me and my family is destated about this one. I did a research about my condition and read Dr. Mercola's article about mrsa infection and found out that it killed thousand if not treated early. But my physician told me not to worry too much. but I can't really help it at all.