Friday, January 13, 2012

Have You Missed Me?

I've been a little off this week. I'm not supposed to talk about all the drugs I am on. I upsets Grace . She envision someone deciding they want them and breaking in. Trust me, no one wants this stuff. So all I'll say on the subject is this - we haven't found the right combo. BlueCross; the Commonwealth Choice people & certain other entities are alternately very helpful and are-you-shitting-me difficult.

Have you heard about this little bureaucratic war between the FDA & the DEA? Certain controlled substances are meted out on a schedule by the DEA. Drug manufacturers take the supplies and make some brand name and some generic prescriptions. When the generic versions run out, the FDA asks for more of the controlled substances to be released. Sometimes they are. Sometimes the DEA says no. They tell the FDA to instruct the drug manufacturers to suck it because they chose to produce too much brand name in an effort to make more money.

Isn't that awful? A private company, employing US citizens trying to make more money? I am aghast.

So, a government agency makes it difficult for these companies by holding back supplies. Ostensibly, the DEA is supposed to be "controlling" these drugs for our safety and to prevent abuse. However some of the drugs on this list are not drugs of choice. Some are chemotherapy drugs. So all I see is a government entity trying to backdoor drive down drug prices. In a capitalist society, that's a function of the market place, isn't it?

You know who produces the best, newest stuff? Places where the producers can make money. You can say that it's wrong for some drugs to cost so much, but that's how they pay for the failures. Do you want them to stop trying?

People cry about the cost of drugs, but there is plenty of help out there. I was taking a drug at one point that cost $10,000 for a month prescription. My copay would have been 50%. The manufacturer helped me out. Drug manufacturers don't want people going without, they just want to collect from who they can. Then they fund more research.

And I want them to keep looking. You see me now and you think I look great and you are all excited about my remission. But they have just kicked my can down the road for a couple of years. The Multiple Myeloma people who are IgG can get 10, 20, even 30 years out of a combination of chemotherapy and bone marrow transplant. Not me, I am IgA. They will begin to look for signs that I am slipping out of remission 18 to 24 months after my transplant. I am fast approaching the one year anniversary of my transplant on February 10th.

I have drugs to put me to sleep and wake me up and dull my pain and counteract other drugs I am taking.

So I am a big fan of R&D.

In the meantime I play with all kinds of pills. And I am grateful to the riders Blue Cross issues so I can get brand name drugs because the DEA is messing where they don't belong.

And I am grateful to the Commonwealth Choice people and Blue Cross for their patience while I went about proving I live in Massachusetts. This is no easy feat if you don't have a mortgage or lease or rental agreement or utility bill. But I had to do that because the Commonwealth of Massachusetts requires it of those who deal with the Connector. That's how people in Massachusetts purchase private insurance. Not just people who are subsidised, my premium is $800.88 per month for a single subscriber.

Thanks to RomneyCare, you can purchase insurance privately in case your employer doesn't furnish it or in my case if what your employer furnishes wouldn't take care of a pesky cancer patient like mee......but it's still a lot of "red tape".

So the long and short of it is, between drug experiments and getting the drugs covered, I haven't had time for much else. I've been sleeping a LOT.

And I have missed you too!


Greta Perry said...

And may all your sleepy dreams be great ones of you commanding the Navy!

Merrill Lockhard said...

Hang in there. I can tell you're a fighter and survivor.

Kanani said...

Sorry, Maggie. You've been on my mind a lot. Hope you'll feel well enough to come to San Diego this month. If not, then I'll come to you. XO K