That is what I have lived on for the past six days. Not very tasty and certainly not very filling. Also, not even remotely good for my Hereditary Angio Edema (HAE).
Apparently, the powers that be decided to “consolidate” distribution of Cinryze, the blood product I use to control my HAE and keep it from killing me, without telling any of us patients. By the time I found out the reason no one was returning my phone calls the week of March 15th (which was when my Specialty Pharmacy should have contacted me to set up my monthly refill) by virtue of their voice mail boxes disappearing on March 22nd, I was down to only 3 doses, enough to last me until March 26th. Need I say this was not good?
When I was put through to the new distribution team on March 22nd, they hadn’t even finished inputting patients into their computer or verifying insurance information. Enter Madame Panic and Monsieur Paranoia, who all by themselves were capable of making those 3 doses only last through March 24th. Lots of hot soaks in the tub and meditation ensued between bouts of phone calls to every resource I could think of to bounce me to the top of the priority list and keep me there.
I kept all 8 fingers and both thumbs on the carotid artery of the operation, making sure that everyone was doing what they needed to do to make IT HAPPEN, and a good thing, too, because on March 24th they were going to shift me to the California distribution center because, wowzer!, my co-pay was going to be $5,000 and it would be billed differently by the California dudes. I’d have laughed if I could. My co-pay is a lot more than $5,000! My co-pay is closer to $9,400 a month. It’s still coming up as $5,000 now because my insurance carrier still hasn’t paid my January or February Cinryze claims (but that’s another fricken story). The first claim to get paid will put me at my catastrophic maximum (what President Obama and that hateful new health law wants EVERYBODY to have) of $5,000 – so my co-pay can’t be more than my catastrophic max. “Oh, then let’s keep you on the East coast!” Duh! Plus, we’re trying to do in 3 days what normally takes a few weeks and on March 24th you want to send to California where I have to start everything all over again? I swear, I thought I felt an aneurism developing that day.
The next day, Thursday, they FedEx everything over night for Friday delivery, but you know, don’t you, that the shipment wasn’t right, ‘cuz that’s Murphy’s Law. So they FedEx over night for Saturday delivery the last bits and pieces, and Madame Panic and Monsieur Paranoia finally left the building.
On the 22nd of March I realized that, for the past year, I have lived with a false sense of security and safety when it comes to my HAE. Oh, I never stopped being conscientious about or conscious of my condition, but I had felt a huge weight lift when I finally had Cinryze in my home and could do infusions myself in December of 2008. Now I recall with vivid clarity just how much I am at the mercy of the supplier and distribution system and the weight is back. Any of us who MUST have a medical treatment to survive that we cannot make ourselves is in thrall. At any time the manufacturer can decide to stop making the product, and there are as many ways to disrupt distribution as there are to die.