The Insurance companies and pharmas are in co-hoots as far as I can tell.
This does not mean you have no recourse. Contact your Insurance company and make a fuss. See what they can tell you.
I'm having problems with mine too. After 5 years of success on prograf, they will only now pay for a generic which has given me gastro problems. But I'm working on a fix.
My liver transplant was in 2010 and I was able to get my so called specialty meds from my local pharmacy. Just about 4 months ago my insurance (Big 3 Blue Cross/Blue shield) made me go to to their mail order pharmacy also.
It was smooth in the first 2 fills, but then it got a bit hairy as I ended up going 2 days without my Cyclosporine. Problem is the drug companies ask too much $$$ our ins. don't want to pay it. Now factor in the new laws from the Affordable Care Act . . . well then it gets political. Sending you my best wishes on fighting for your rights! Just stay calm but steady.
I understand your predicament completely since I was in a similar situation also. Please let me start by briefly describing my own situation...
I'm 17 yrs. post liver TP, done 2 The University of Pittsburgh in Western PA.
I currently take 2.5 mg x2 daily(2 1mg & 1 0.5 mg pill)of Tacrolimus...
I was on Prograf for roughly 14 yrs. post TP. And since my TP I would always use express scripts as my Specialty Pharmacy, and there were occasions where the pharmacy did screw up on delivery and I would be close to zero prograf before I received my shipment.
Only because I started building a reserve due to many times receiving full bottles of pills instead of what they do currently which is given to anyone only the exact specific count of the pills prescribed for any given amount of time required. Years ago, there wasn't such tightening of their belts until about 8 or 9 yrs post TP for me. I may be off by a year or two but I think this change occurred due to the implementation of part D Medicare insurance which screwed the system they had prior.
So in a futile attempt to make this a short story, we all had to make co-payments for our Prograf and it was affordable until the patent from Astellas/Fukisawa expired and then the specialty pharmacy which was CVS at that time tried to force us to switch to a generic version of the drug even though there wasn't any real study on how effective the generics were for post TP's that were on the Prograf for an extended period of time. By then the co-payments had steadily increased to the point where I could barely afford the Prograf every 3 months. So my TP nurse suggested to enroll into the Astellas patient assistance program they had for low income folks who met their income requirements.
And that lasted for a few years until out of nowhere, Astellas booted anyone on Medicare off their patient assistance program and I then had to make the choice of either somehow finding a way to make the co-payments or switch to a generic equivalent of Prograf after being on it for so many years and not confident at all of the generics instead.
Well, I decided to go with the generics only if they would constantly monitor me to make sure my body didn't start to have problems because of the switch. For the 1st 2 weeks I noticed a big difference and started getting paranoid because I never experienced the sides of headaches and dull pain in my abdomen on the Prograf. And I ended up in the ER on 2 occasions only to be told that I was okay and it was just excess gas. I still had the same sides for another week until all of a sudden they stopped so I stayed on them for a little while. I think it was a year and a half or so nad then I had to go into the ER again because I was experiencing a mild to moderate rejection episode and throughout the time i was on the Prograf, I never had even a symptom of rejection!
I demanded t be switched back to the Prograf and in no time at all I was back to normal as I could be with no sides whatsoever! after I was discharged i demanded to be prescribed Prograf only because of the very reason why I ended up in the ICU this last time of experiencing sides that eventually led to my very 1st rejection episode. I had no problems at all getting what I wanted until the co-payments for the Prograf started to go through the roof and I could no longer afford it any longer. There's so much more that happened around that time but I'm just gong to stick with what involved my Tacrolimus.
Once again I was offered a choice and this time I was put on a generic version of Tacrolimus that was pretty much like Prograf in how it affected me and was very affordable. The only down side was that this pill made me feel very fatigued in short order so I eventually pleaded again to my Doctors to no avail.
And then one day as I always did, I discovered an online foundation that helped post TP patients afford to pay for the original brand name drug they would be on. And this organization, a charity is named the Patient Access Network Foundation. There website address is: www.PANfoundation.org and their telephone is: 866-316-7263.
If you meet their eligibility requirements, they will help you! And the day they initially approve you, they'll send you a letter which will have 2 prescription proof of expenditure forms to send in within 60 or 90 days - I forgot which but these forms will reimburse what you paid out of pocket in co-payment up to 3 months previously from the day you were initially approved by PANF!
So I suggest that you go visit their web site and if you need ant assistance in filling out the application then call them up and someone there will help you and surprisingly, I didn't have to wait long at all for help after I called. Hopefully this will help you and anyone else that can use the help and meets their eligibility requirements. All the best to you!
Thank you Henry. I am going to contact PANF asap.
It sure is frustrating when Insurance companies think they know better than well trained doctors.
After reading your response, I remembered that there were more than one charity foundation that can help you out also beside PANF (Although IMHO, PANF has been the most supportive for me).
So I guess it couldn't hurt for me to share them with you also...
1.) The Healthwell foundation - "When Health Insurance is not enough"
Their website is: www.healthwellfoundation.org/diseases and medications
Note: They will only cover if you have one of their listed illnesses and take specific meds. Their Phone number is: 1-800-675-8416. They offer yearly grants to patients who meet their eligibility criteria and it depends on how much your "income" is and what you pay in out of pocket co-payments for your meds. The grants can be anywhere from $2,000.00 to $4,000.00 per year.
2.) The Caring Voice Coalition: www.caringvoice.org
Their phone# is: 1-888-267-1440
3.) The Assistance fund can help you pay your insurance premiums for medicare. Here's the link to their FAQ:
4.) And finally, here are a partial list of more resources:
Leukemia and Lymphoma Society
Patient Advocate Foundation
Patient Services, Inc.
Here's the link to where you can connect to their websites:
This link is very helpful:
I cannot emphasize enough how much these folks have helped me to once again afford quality food again and other luxuries because of the financial assistance they have given me. You just have to be persistent and patient and they will help and if you're confused about each process, you can call each foundation and they will gladly walk you through the application process okay? Anywho, I hope this helps you out like it has helped me.
All the best to you,
can I suggest to you to take a look at the foundations I listed below to orphanedhawk? Who knows? You may be able to get some assistance in helping you pay your co-payments for your anti-rejection drugs as well as other help with various meds and some will help pay for your insurance premiums too. The worst that can happen is that they cannot help but, I seriously doubt it and it cannot hurt to find out because as you already know how tight money is these days and a little help can and will offer you some financial relief.
To followup on my tacro problem, the numbers you gave were great except I had a catch 22 situation since I have no copay.
After a visit to my liver clinic and help from my transplant department, I'm happy to say I'm back on prograf. It took 3months, but we did it !
Thank you for all of your assistance.