| Author |
Message |
Dave S
Member
Username: Rodeonm
Post Number: 45
Registered: 07-2011
| | Posted on Monday, May 07, 2012 - 08:55 pm: | 
|
Hello all.
I was watching a feature story on the television national news concerning a shortage in cancer drugs for children due too the lack of profit in generic drugs and Congress' lack of attention to the matter. This piqued my interest in something that had happened to me recently concerning the generic immunosuppressant drug "Cyclosporine USP modified."
I order my 90-day supply of drugs, via mailorder, through Medco Health. On my recent order I was notified that the generic form was unavailable and I would have to either accept the brand name product, Neoral, or order it elsewhere. Obviously, I did not have much of a choice and ordered the Neoral. The cost of doing this is substantial...$140.00 vs. $15.00. Nevertheless, I considered that this was probably a one time thing and they would have the generic by the next time that I needed to order. That time has not yet arrived and my doctor has said that there is no shortage that he knows of, but the recent story on cancer drugs made me wonder if generic immunosuppressants are also in danger of being in short supply due to manufacturer's lack of financial gain.
So I ask you...have any of you encountered this problem or heard of it?
Dave
Cadaveric Kidney Transplant (08/87)
Hepatitis C (08/87) from kidney tx
Organ Donor dad {(Virginia, 15) 02/93}
|
|
Rita
Forum Leader
Username: Rita
Post Number: 898
Registered: 06-2003
| | Posted on Friday, May 11, 2012 - 01:10 pm: |
|
I was told the same thing a few months back. I was on Neoral for years and years and then they changed it for the last few years to another similar drug. So when they called and said their was a lack of my drug but my option was neoral i was fine with it. But yes I asked about this and I think I saw the same program as you and I was told no. But the first call from the drug company said there was and issue with it but all i can say is since then there has been no problem. Who knows they are not very transparent and they are only going to give you the information that they feel you need to know.
|
gratefuldeb
Member
Username: Gratefuldeb
Post Number: 187
Registered: 05-2009
| | Posted on Monday, May 14, 2012 - 12:52 pm: |
|
I was on Gengraf (cyclosporine) for my first two years following transplant. When we moved, my new pharmacy told me I could only get "generic" cyclosporine. I was OK with this, as was my center, until they started using different sources for the generics. I asked them to please provide me with a consistent generic label, explaining to them that although all generics are considered bio-equivalent to name brand Neoral, they are not tested against each other, so you might be switched from a generic that runs on the low end of the range to one that runs on the high end.
The pharmacy tried their best, but around February of this year, I was told they could not source the generic I had been on, and could only get me Gengraf! Rememer, they had told me previously, on two different occasions, that they could not provide Gengraf (due to cost). So, I have now been back on Gengraf for four months, at the same co-insurance rate.
I don't know what is going on with the suppliers. I am dealing with a chain pharmacy in a small town, and I know they will do their best to help me, but since their orders are filled at a large warehouse, they don't have much control.
Debra
Heart Tx 9/08
Stanford University Medical Center
Dx: Right sided heart failure due to a rare form of muscular dystrophy
I have a beautiful new heart from a wonderful donor named Robin, to whom I will be forever grateful.
|
|
Dave S
Member
Username: Rodeonm
Post Number: 46
Registered: 07-2011
| | Posted on Monday, May 14, 2012 - 06:35 pm: |
|
Thanks for the input Debra and Rita. I still don't have a definitive answer from those in the know...it's all very hush-hush. Frankly, I am just cynical enough to think that this is a conspiracy to aid Novartis' bottom line by eliminating the generic market, but I hope not.
Cadaveric Kidney Transplant (08/87)
Hepatitis C (08/87) from kidney tx
Organ Donor dad {(Virginia, 15) 02/93}
|
|
Happy2Bhere
Forum Leader
Username: Happy2bhere
Post Number: 4587
Registered: 02-2008
| | Posted on Monday, May 14, 2012 - 10:00 pm: |
|
I have taken Neoral Cyclosporine for over 20yrs although my Pharmacist attempted to change me to generic Gengraf a few yrs ago. My transplant Cardiologist quickly contacted the Pharmacist and insisted that I continue with my name brand Neoral. I have been taking Neoral ever since.
At the time of my heart transplant in January 1991, I was started on Immuran Cyclosporine in liquid form.
Ol' Bob
|
Dave S
Member
Username: Rodeonm
Post Number: 47
Registered: 07-2011
| | Posted on Tuesday, May 15, 2012 - 01:14 am: |
|
I, too, remember those days Bob. My concern is the cost. I live with my wife on a very limited income (<$25k/yr.) and a nearly 1000% increase in the co-pay will bust our budget. I have used the generic form since the very first day that it became available and have never had a problem. I am fairly certain that there are others who would be adversely affected as well. The brand name 'Neoral' is just too darned expensive.
The saving grace is that what I have experienced may prove to be simply a one time thing. I hope so.
Cadaveric Kidney Transplant (08/87)
Hepatitis C (08/87) from kidney tx
Organ Donor dad {(Virginia, 15) 02/93}
|
|
|
