I have a story to tell you and I am asking for your help. I believe that this goes well with President Obama's wish for health care improvement.
Let me start with a brief overview. I have an inherited illness called Familial Mediterranean Fever. (You can read more of this on this blog below this post.)
Doctors in the USA say it is a 'rare' illness. It is not. It has just been misdiagnosed as everything under the sun including any diagnosis that ends with 'itis,' because one of the major components of Familial Med. Fever is inflammation.
The medication for Fam. Med. Fever is colchicine given in 0.6mg twice to four times daily for life.
Colchicine is one of those old drugs - the doctors to the Pharaohs of Egypt gave it to them for their arthritic-like pains - and it has been grand-fathered in without FDA approval because of the common usage of it for treatment of gout and FMF as well as some newer uses for diseases like Behcet's Disease, recurrent chronic pericarditis, as well as for people with chronic constipation among other things.
Recently URL Pharma, Inc. has run tests on colchicine and the FDA because of these tests, has now given URL Pharma the sole rights of distribution for colchicine.
URL Pharma will be or is already, suing any other pharmacies who manufacture colchicine (generic) for infringement of their formulary and those companies are now ceasing production of colchicine or will stop shortly.
The cost of colchicine for me after insurance payment has run about $10.00 a month. The cost of Colchrys, the name of the new single ingredient (colchicine) script from URL Pharma for gout, FMF etc will, my pharmacist tells me, be approximately $300.00 per month.
Other sufferers of FMF who take 4 or more tablets per day, will see monthly bills of $800.00 or more.
I am a senior citizen on Medi-care and with AARP prescription services, so I receive limited benefits for drugs. I have limited disability income and a small pension.
Before I found the diagnosis of Familial Mediterranean Fever, I was for all intent and purposes bed-ridden. The pain I suffered never went away and it was excruciating. I believe I would now be dead without colchicine. It allows me to lead a near normal life for a person of my age. I am able to do housework and to enjoy my life. I am miserable thinking of what lies ahead of me should I be unable to afford this medication. I believe I will die without this medicine which I will be unable to afford.
You can read more information on Familial Mediterranean Fever by continuing to read below this post on this blog. There is LOTS of medical data on there as well.
I moderate a world-wide message board for people with Familial Mediterranean Fever. See:
http://health.groups.yahoo.com/group/fmf_support/messages
Nancy Sparks Morrison
5113 Lynwood Dr.
Charleston, WV 25313
1-304-776-5601
nmorri3924@aol.com
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5 comments:
Hi Nancy,
Thank you for the message on my blog. I see you have a Yahoo group, so I'll use that in future to contribute to this campaign.
I know we can make a difference, but it is rather late here in the UK at the moment, so I'll join there tomorrow, and mobilize my gouty forces.
Thanks Nancy! I posted this to FaceBook. I am looking at $887 for Colcrys per month to keep my FMF under control vs $10.00 for generic. Hopefully some of our healthy friends and family members will join in by writing the President and Congress about the greed of Pharma URL.
Btw, it looks as if they are going to try make Quinine proprietary too. Malaria sufferers, watch out!
I have been taking colchicine for gout for years. My cost for a 90 day suppy was $10.00. Now it has been changed to Colchrys and the cost went to $100.00 in one fell swoop. I think the FDA should be examined and some heads should roll !!This is totally scandelous.My income needs fixing. Is this move another example of Obama care ?? Or is it a payoff for someone?
My daughter has Behcet's Disease and takes 2 tablets of Colchicine a day. We have no insurance at this time and just don't understand why after decades of Colchicine use, they now are restricting the manufacture of the drug to just one company. It has to be a money thing.
I'm so glad I found your blog. I'm 66 and was finally diagnosed in 1979 and colchicine has enabled me to live a somewhat normal life. I've had FMF since I was 2. Now that I have to use Colchrys (there are now a lot of coupons) I have been very queasy and nauseous. I only need one pill a day and never had these symptoms before. Has anyone else had the same problem?
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