I was notified about a month ago that Caring Voices would pay for the first year and then re-evaluate every year. Next to be called to into play was my insurance company. Since I am on Medicare I get my health insurance through them (which I pay for every month) Medicare denied the first request although there are only two drugs for PF on their formulary and they both cost the same amount. After a second request from my doctor, who reminded the insurance company that there were only 2 drugs approved to slow down PI, they agreed to pay their share. By the time this all happened, I had been without the drug for almost a week. This scared me. I was doing nothing positive to slow down this disease.
Now here is the part that just blows me away. This drug that I take a normal dosage of, 9 pills per day, costs $100,000+ per year!!!!! If I had to pay my portion, which is 20% per month, I would be liable for $7,800 per month. Who can afford that? It is beyond my comprehension.
I am so grateful for Caring Voices for the part they have contributed to my health, and my hope, but I have a real problem with the government trying to tell me that they weren't going to pay for a drug that is one of two drugs available for people like me. All I want is a fighting chance to try to stay ahead of this disease with no cure. I know I'm 71 now, but I'm not done living yet. I have so much I still want to do and see. I have grandchildren that I want to see grow up. It would be wonderful not to spend two weeks on the phone trying to get this straightened out.
This is a lesson I learned many years ago, after my sweet Sara was born. You have to be your own advocate(or in Sara's case, my child's advocate) No one is going to do it for you. I got the pills today!! I got them because I called my doctor's office, my case manager at the drug company and my insurance company every single day. At first it bothered me that my case manager would say she was going to do something and then I would find out the next day that it hadn't been done, so I started calling her 2 times a day. If nothing else, I AM tenacious and I do not give up. I will sleep better tonight knowing that little drug is making it's way through my body and hoping it is doing everything is was designed to do, even if it does cost a whole lot of $$$$. You can't put a price on life in my book. I treasure every minute.